The political and the personal: narratives by women with disabilities serving in administrative positions in the Municipal Council

Abstract

In this contribution to feminist disability studies, I seek to analyze the experiences of women with disabilities who occupied/occupy administrative positions in a Municipal Council, highlighting their intersectional experiences. To do so, I used the methodologies of Narrative Research, Content Analysis, Participatory Research, and Intersectional research. As a main result of the study, I obtained confirmation of my initial hypothesis that more than one type of system of oppression is at work when a woman with a disability occupies a public administrative position.

Municipal Council; Feminist disability studies; Intersectionality; Women with Disabilities; Narrative research

Resumo

Nesta contribuição para os estudos feministas da deficiência, busquei analisar as vivências de mulheres com deficiência que ocuparam/ocupam cargos de gestão em um Conselho Municipal, destacando suas experiências interseccionais. Para tanto, utilizei as metodologias da Pesquisa Narrativa e da Análise de Conteúdo, além da Pesquisa Participante e Interseccional. Como principal resultado, obtive confirmação de minha hipótese inicial de que mais de um tipo de sistema de opressão pode atuar quando uma mulher com deficiência ocupa um cargo de gestão pública.

Conselho Municipal; Estudos feministas da deficiência; Interseccionalidade; Mulher com deficiência; Pesquisa Narrativa

Do not be alarmed if I tell you that people with disabilities exist

This article¹ was written by two people but is narrated in the first-person singular by the first author. More than a matter of style, this is a methodological choice which aims to make personal experiences visible. The second author participated in this study as an advisor and as an interlocutor, helping to develop the analyses presented here.

Having made the above observation, I highlight that, as a white, cisgender woman with disabilities, I experienced how the intersection of these categories intensifies social surveillance, prejudices, and creates the expectation for a stereotyped personality pattern, in which gender expectations are exacerbated. For example, the presumption that I should be a docile, submissive, and an asexual woman.

These expectations become even more pronounced the greater the degree of the disability and its dissonance from aesthetic and functional standards (Gavério, 2017) of a human body considered typical and “efficient”. Though the social trend is to use terms that disguise prejudices, ableism (a concept that expresses discrimination against people with disabilities) continues to occur.

I was born with two types of disability (physical and hearing). My childhood memories are largely made up of frequent visits to medical and rehabilitation sessions, the main aim of which was to “enable” me to live an independent life. This goal was partially achieved due to the particularities of my clinical case: I learned to eat and walk on my own. However, I still have major restrictions in the movement of my arms and neck, so I will always need the help of caregivers.

To this day, I must address social questions about my intellectual capabilities and about whether I feel guilt for not being able to carry out everyday tasks independently. “But did you really do all the exercises you were given in physiotherapy?”; “Are you sure you can’t dress yourself, or is it because you don’t want to?”; You’ll always live with your parents and you won’t get married, because who would want a wife like that?”; “If you were less crooked, you’d be prettier”. These are the most striking phrases I have heard from other individuals, and I reproduce them here to illustrate some of the ableism that people with disabilities face on a daily basis, and to demonstrate how such questions are related to issues of gender and sexuality. According to the logic in the phrases, the responsibility for arousing the feeling of love, respect, or desire would be the sole responsibility of the individual, relieving society, the state, and medical and media discourses from the responsibility to organize themselves to assist and guarantee civil participation to people with disabilities.

The social vigilance intensifies when I rebut ableist comments. It is not unusual to receive reactions of astonishment and even a certain reprimand from some people because I am defending myself with a certain vigor. Such reactions are not expected from a white woman, as the presumption is that she would act in a bourgeois manner. In other words, I am not supposed to “do a barraco” (to make a scene), a term that denounces the classicism of Brazilian society, which is not easily separated from its racism. These expectations toward my behavior are even more thwarted when they realize the reaction comes from a young woman in my position.

All these findings are in line with assertions by theorists from feminist disability studies (Mello; Nuernberg, 2012), who explain that the categories of disability and femininity are mutually reinforcing. This is because both are associated with the same stereotypes (passivity/activity) of their respective identity dichotomies, femininity/masculinity and disability/non-disability, creating a “double disadvantage” and potentially excluding women with disabilities.

The theoretical connections between disability and gender studies were deepened, as mentioned above, with the development of feminist disability studies, which are considered the second generation of disability studies. I broaden this debate by utilizing an analysis that considers intersectionality as a methodological and analytical tool, which allows me to reflect on the interviews that make up the empirical material in this article.

In this first section, I think it is essential that we take a closer look at the development of the movement of people with disabilities, turning to its connections with other identity movements that gained prominence during the second half of the 1960s. In the context of political struggles for visibility and equal rights for various social categories, academic and activist mobilization by people with disabilities emerged. Its agenda was to contest the biomedical model, which reduced human complexity to the bodily condition of having a disability. The mobilization of people with disabilities later broadened its agenda, dialoguing with other movements that, like itself, criticized the restriction of disability to the biological dimension, leaving no room for dialogue with the social dimensions of disabilities (Gomes et al., 2019).

In this way, the first critics and activists of disability studies sought to demonstrate that the “limitations” experienced by this category of people were not in the bodies themselves but were due to the architectural/visual/communicational/attitudinal barriers found in all spheres of society. For the first time there was an epistemological separation between the concepts of impairment and disability, the latter being caused by lack of accessibility in the social environment.

According to the first theorists of disability studies, if the above-mentioned barriers were eliminated, and the necessary support for people with disabilities was adequately provided, these individuals would be on an equal footing with others. This theory was coined by the activist and academic movement as the Social Model of Disability. “From this model, the problems faced by people with disabilities are the result of social oppression, rather than their individual deficits. This transfers a certain moral responsibility to society” (Gomes, 2019:2). However, from the 1990s onwards, these theories, and the way in which they were engendered, began to be questioned by other representatives of the disability movement, such as by women with disabilities, feminists, and mothers of children with disabilities that are considered severe by the biomedical model. The collaboration between feminist theorists and the field of social studies of disability, culminated in the second generation of this movement (feminist disability studies). It brought visibility to other social realities, including the intersectionality of gender, race, sexual orientation, human interdependence, and the right to care as a fundamental element of dignity which is not restricted to the private sphere of life of the individual with disabilities and their caregivers. In addition, feminist theorists also brought to the movement’s agenda discussions about pain and about people whose disabilities totally incapacitate them to lead independent social lives (Diniz, 2003).

In short, disability studies is currently a multidisciplinary field, in which research is in dialogue with areas of sociology, psychology, and anthropology, addressing issues such as sexuality, human rights, and public policies. The exchanges between disability studies and feminism have also generated other critical perspectives, such as crip theory, which seeks to disassociate the concept of injury from that of abnormality, highlighting the role of discourse in the construction of social categories. According to crip theory, “[...] the ‘normal, non-disabled body’ (able-body) can only emerge in a system of ‘compulsory normality’, in which its opposition is specified and embodied in the figure of the ‘disabled’” (Gavério, 2015a:73).

A person with disability, researcher, activist, and feminist

Since I became a researcher and activist, both for people with disabilities and for feminism in Brazil, the question of intersectionality is repeatedly raised. How can I think about my body without considering my gender, color, sexuality, place of class, and age grading? Although the notion of intersectionality is widespread today due to black feminist movements, there are different theories about the concept of intersectionality. Intersectionality is treated here not only as an analytical tool, but also as a methodological device. This is because I analyze the experience of cisgender women, socially treated as white and who have occupied leadership positions in a medium-sized city in the interior of São Paulo. I also consider how the relationship between these different identities impacts their experiences as people with disabilities and how disability makes up these same lives, without failing to underline the diversity within “disability” itself.

As Michel Bérubé (2021) argues, to consider how disability is intertwined with other markers of difference is always a complex operation. A complexity that is blatantly apparent in this research, in which I sought to give visibility not only to the tension between gender and disability, but also to the invisible daily struggles that the women that were subjects of this study go through in their quest to conquer their space and guarantee their rights.

The conservative upsurge that has marked the Brazilian national and international political scene since 2018 has had serious consequences for identity movements. Reach on the voices of women with disabilities in contexts where women face an anti-gender offensive is restricted (Prado; Corrêa, 2018). Such lack of research is clearly anti-feminist and implicated with neoliberalism, which is by definition ableist.

When I chose a research topic for the final requirement in my graduate course, I considered investigating a Municipal Council involved in protecting the rights of people with disabilities, as this is a political space for clashes, activism, and the legitimization (or not) of social rights. The choice took into account the place that women with disabilities occupy in the Council. I found a place in which to conduct the study, in a city close to where I come from and where I could act as a person with a disability myself. This is because the position of general coordinator was being held by a woman with paraplegia².

How do these women with disabilities deal with the challenges of managing the City Council, considering gender, class, and disability as fundamental social markers for understanding the ways in which their public and personal lives are intertwined? Given that the political arena is mostly made up of men without disabilities, what types of oppression do the female administrators in question face and how do they make sense of these experiences? How does participation in a Municipal Council focused on the rights of people with disabilities shape the subjectivity of these women? These are the main questions I sought to investigate in this study.

Due to the nature of the research problem, I utilized a qualitative approach in this study. I utilized the Narrative Analysis methodology, as the study involved subjective experiences and narratives from human beings.³ In order to carry out Narrative Analysis, I conducted semi-structured in-depth interviews, a technique that was considered the best choice because, based on a reduced number of questions, the interviewee is free to talk at length about the topics requested (Duarte, 2005).

It is also worth mentioning the use of the Participatory Research method during the early stages the study. Participatory Research is defined as “[...] a type of investigation in which the researcher interacts with the group being researched, follows the activities related to the ‘object’ under study, and plays some cooperative role in the group” (Peruzzo, 2005:137). This methodology contributed to the choice of the Municipal Council as the place in which to conduct the research, and in the selection of the women with disabilities who would be interviewed.

Regarding intersectionality, I seek to approach social phenomena, such as disabilities, from a critical perspective that does not isolate oppressions or disregard their disruptive power. I have tried to carry out research that is attentive to

different experiences of oppression and intra-gender privilege. This is only possible when the universality of “being a woman” and “being a man” is challenged by the analysis of the corporealities that mark these experiences, produced in contexts that racially hierarchize subjects⁴ (Díaz-Benitez and Mattos, 2019:82).

To complement the above statement, I would add that these contexts also hierarchize corporealities based on the “efficiency/disability” binary.

To be a woman with a disability⁵, argues Andrea García-Santesmases (2023), is to be in a gender limbo, with an annulled or fetishized sexuality. In this way, intersectionality works as a theoretical-methodological tool capable of demonstrating how structures of domination (Akotirene, 2019) such as sexism, racism, ableism, and neoliberalism itself, are inseparable. Logics of neoliberalism that praise the capable and efficient individual contributes to shaping a discursive myriad through which disability is infantilized, degenerated, and disqualified as a form of possible citizenship.

So, if women who are considered typical, i.e. who meet the standards of supposed “normality” and “efficiency”, already face taboos and other challenges when taking on leadership positions, both in the public and private spheres, simply because of their gender, what are the experiences of women who, in these same situations, still have another social marker of inequality: disability?

In terms of the Municipal Councils, these are permanent public bodies of equal composition and deliberative nature, which have the task of formulating, supervising, and evaluating the implementation of public policies in different areas of activity. These Councils must be created for the municipality to receive financial resources from the federal level (Bronstein et al., 2017). My choice to conduct this study in a Municipal Council focused on defending the rights of people with disabilities had to do with the fact that, in the past and present, there were two women with disabilities in administrative positions (of general coordinator) in this particular Council.

As a principle of ethical research, I chose to use fictitious names for the subjects of the research, and not to identify the Council or the city where the Council was held to avoid possible issues and embarrassment due to the content of the testimonies collected. Therefore, the interviewees themselves chose another name to be quoted as in the article. Below is a brief description of the two research participants:

- Cibele defines herself as a white woman and is the first woman with disability to coordinate the Council in which this study was conducted. She served on the Municipal Council’s board for a two-year term and held the position of first secretary for another two years. She is between 50 and 60 years old, is retired, and holds a technical degree. The interview with Cibele took place on June 7^th, 2019, in person in a public place, and the audio was recorded and sent to be transcribed by a paid collaborator with my own resources, as I have deafness, which does not allow me to understand human voices without visual support (reading the person’s lips while they speak facing me).

- Laura defines herself as a white woman with a disability and held the position of the general coordinator of the Municipal Council during the course of this research. Previously, she held the positions of second secretary and of vice-coordinator on a temporary basis. She is between 30 and 40 years old, is also retired, and holds a technical degree. The interview with Laura took place on June 16^th, 2019, online, at her request, via an instant messaging application. The written conversation was exported and saved in a text editor.

A semi-opened interview script was produced for interviewing both participants, in accordance with the chosen methodological technique. After collecting the testimonies, the interviews were analyzed using the methodology of Content Analysis with the technique of Category Analysis.

“Content Analysis (CA), in broad terms, refers to a method in the human and social sciences designed to investigate symbolic phenomena using various research techniques” (Fonseca Júnior, 2005:280). According to the author, the main objective when using the method is inference, which “[...] is considered a logical operation designed to extract knowledge about the latent aspects of the message analyzed” (2005:284).

Category Analysis, also known as categorization, is a technique that “[...] consists of classifying and regrouping the recorded material into a reduced number of categories, with the aim of making the mass of data and its diversity intelligible” (Fonseca Júnior, 2005:298). In other words, the categories are analytical structures organized by the researcher to facilitate the work of inference and analysis of the material collected in the interviews.

By carefully reading the testimonies of administrators with disabilities, I selected three analytical categories that encompass a series of rich experiences and subjectivities: the awakening to activism, which includes the women’s accounts of the motivations that drove them to take part in the fight for the rights of people with disabilities in the Municipal Council; public policies and administration, in which the interviewees made remarks about their work in the Council and the implementation of public policies for people with disabilities); and intersectionalities between gender, disability, and public administration, in which the interviewees reflect on the intersectional condition of being a woman with a disability occupying a administrative position.

Awakening to activism

Recognizing oneself as a person with a disability is often not an easy process. Because of the disability stigma that explicitly and implicitly permeates all aspects of the individual’s life, there is a social focus on understanding disability as a medical-rehabilitative issue (Gavério, 2015). Thus, it is not uncommon for people with disabilities to be seen as an “object of study”, or an “abnormality”, perceptions that focus precisely on the factor that differentiates them from the standard “typical” human being. This social treatment of these people was what stimulated the research and activism of the first theorists and activists in the field of social studies of disability in the mid-1970s (Diniz, 2003).

Theory and activism often go hand in hand when it comes to exposing the oppressions, invisibilities, and breaches of human rights that people with disabilities can end up experiencing during their lives. This “awakening” to activism, i.e. the quest to defend their rights and those of other people, by recognizing themselves as belonging to a segment of the population that is still seen as an almost invisible minority, is often facilitated by contact with other individuals who live in similar situations. Exchanging experiences and mutual support can serve as drivers for developing awareness and social engagement. That’s how I became an activist for the cause of people with disabilities, when I did an internship at an association for deaf people and met several people with similar experiences to mine. Cibele also shared a similar story:

I’ve always been a person with disabilities, but I started to feel it a lot more after I became wheelchair-bound, because I’m more limited. I went through the three stages [of disability]: I used a cane, I used crutches, and today I’m in a wheelchair. And so, I think, even today, that we people with disabilities who have had a good life, who have had the chance to study, to grow up.... I think we have a social obligation towards people with disabilities who are less well-off than us. [People who are less] financially and socially advantaged, because there are a lot of people who don’t even know their rights, right? But my first involvement with the cause of people with disabilities was a few years before I became wheelchair-bound, when I met [personal name deleted], who ran [name of organization deleted], a support center for the disabled. I became friends with this girl, she had progressive muscular myasthenia. She has since passed away. She was very committed, her family was well-off, so she had a high profile here in [city name deleted], right? And I started to like militancy through her. When I met her, I became her friend, but I never imagined that I would be a wheelchair user today, you know? And then, when I became a wheelchair user, it was precisely when I began to feel the need to dedicate myself more, because now I had time. After I became a wheelchair user, I was retired due to my disability, right? So, I have time available for this [...]. So, I got involved with a wheelchair users’ association, we founded the first wheelchair users’ association in the city, and then I felt the need to get to know the Council more closely. And when elections were held, I was the general coordinator, and in the second term, I was the first secretary (Cibele’s statement, my emphasis).

Cibele has no memories prior to being a person with disabilities. Her experience is similar to mine, since I was diagnosed with dystonia when I was eight months old. Although the disability has been present since the beginning of our lives, social engagement and awareness only began after we joined associations.

Cibele also mentioned another factor that has contributed to her engagement in political activism: having gone through different “stages” of disability, in her own words. During her life, she developed medical complications that changed her physical condition. Because of this, Cibele perceives disabilities in a hierarchical way, especially regarding the ability to stand or walk compared to being in a wheelchair. This becomes a powerful element in her described scale, in which she lists the “third stage” of her disability that, together with other factors (mainly her previous experiences with her activist friend), has led her to become more involved in social movements.

I myself have felt this “hierarchy of disabilities”. “At least you can walk and don’t need a wheelchair” is a phrase I hear all the time when I tell other people the details of my disabilities. What is implicit in this discourse is that the wheelchair would result in an advanced stage of limitations, although the perception of “limitation” needs caveats.

According to crip theory, the concept of limitation does not refer exclusively to an individuals’ bodily configurations, but rather to their interaction with the barriers they face on a daily basis and that are present in the construction of physical, social, and political environments. One of the primary issues that defines the scope of crip theory is the assertion that “the ‘problem’ is not the person with disability, the problem is the way that normality is constructed to create the ‘problem’ of the person with disability” (Davis, 1995: Kindle edition). “What crip theory does is question the exclusion of ableism from the matrix of intersectional discrimination in queer, feminist and decolonial theories”, proposes anthropologist Anahí Guedes de Mello, in an interview with Argentinian researcher Lelia Schewe (2020:221).⁶

In dialogue with this theory, Andrea García-Santesmases Fernández places the body, desire, and the ability to name oneself as constitutive elements for a crip theory. Fernández stresses that “the main contribution of crip theory lies in the denaturalization not only of the ‘disability’, but precisely of the category that is presented as an innocuous norm, that is made invisible as a neutral model: ‘ability’” (2017:31). Therefore, it is not a question of disregarding the fact that I have a body and that it has limits that most bodies do not have. Rather, this theory is interested in pointing out that part of these limits are political and that “ability”, like heterosexuality, is not natural. Both are part of “normality”, an imperative.

Robert McRuer, in his book Crip Theory: Cultural Signs of Queerness and Disability (2006), highlights the queer strategy of appropriating insult. To name the critical field of study as crip (crippled) is to take on the term as a political category. This is a political-linguistic movement inspired by queer studies, in which the term crip that stems from a degrading adjective directed at non-cis-heterosexual people is used by queer studies as a key to destabilizing hetero-cis-normative values (Mareño, 2021).

When Cibele starts to see herself as politically disabled, she also starts to consider her potential in politics. What drives her in this process of political awakening is the way she has experienced the hierarchization of her disability. This hierarchy produces a body that experiences loss of capacity, but these losses get worse as Cibele starts to be challenged by barriers that, paradoxically, underpinned her path to activism.

The “hierarchies of disability” also play an intersectional role in Cibele’s political activities, as we will see later in the analysis of the category “Intersectionalities between gender, disability and public administration”. When the interviewee mentions a “social obligation” in relation to activism, she is referring to her status as an educated woman belonging to the professional middle class, which would equip her to fight for the rights of people with disabilities who are less advantaged than her in terms of class and education.

It was precisely the search for knowledge about the rights of people with disabilities that prompted Laura to join the Municipal Council. Unlike me and Cibele, her disability was only acquired in adulthood, in a domestic accident. After this event, Laura sought political activism as a space to learn about her rights given her new bodily condition.

My motivations, at first, were to acquire knowledge about public policies related to the rights of people with disabilities. Before [the accident] I didn’t pay attention to [disability rights], because it wasn’t my reality (Laura’s testimony, my emphasis).

The invisibility that surrounds the segment of the population of people with disabilities becomes explicit in Laura’s statement, as she says that, before she became an individual with a disability, she paid little attention to the themes of this universe. This statement is representative of the popular belief that disability is a specific issue and far removed from social and academic matters (Mello; Nuernberg, 2012).

Public policies and administration

Invisibility marks the daily lives of people with disabilities and is exacerbated in contexts of power. Cibele talks about this reality when she recounts some of her experiences as a general coordinator of the Council. She takes a deeper dive into this problem by emphasizing that the lack of visibility and legal knowledge about the knowledge about activism is a shared reality among people with disabilities themselves:

Unfortunately, what I also see is that the participation [in activism]of people with disabilities themselves, who should be the protagonists of their own history, doesn’t exist. Few people with disabilities have the social awareness to participate, to be concerned about the cause. Like the Council, for example, it still lacks a bit more visibility. There are many people who don’t even know the Council exists. The Council also lacks an appropriate physical location. And a family that has a person with a disability also lacks the awareness that the Council is a means, an important tool for inserting the family member [with disabilities] into the context of society, into the context of the struggle; it’s about creating political awareness. When I say political awareness, I don’t mean party politics, I mean social politics. So, I think there’s still a lot missing for people with disabilities to be the protagonists of their own history. [...] When I was in charge of the Council, every social or political cause that came before us, we always looked into it closely, we always tried to monitor and demand an answer. Because, unfortunately, the Council is limited, it can only go so far. “It makes a suggestion, it can put forward a proposal, it can monitor issues, it can make demands, but it can’t execute policies”, so our power is limited. In my opinion, when I took part in the Council as a coordinator, we always had a lot of difficulty with the public authorities, they didn’t make much of an issue of it, you know? The way they see it, we’re still a minority, and minorities often don’t achieve much. I think that if the Constitution itself were effectively applied, we wouldn’t even need all the laws that exist. Because there’s no point in having a bunch of laws that are not put into practice [...] For example, the LBI [Brazilian Inclusion Law] itself, although it has been fully sanctioned, it is still not enforced as it should be. So I see that the LBI is just another law. The environment is never adapted for a person in a wheelchair, because they never think about the person’s mobility. And the issue of accessibility, we have to take into account that it’s not just a ramp, that it’s not just a wide door, that there are other needs (Cibele’s statement, my emphasis).

The persistent discourses that make disability a social problem and a personal tragedy create mechanisms for isolating people with disabilities. These discourses not only exile people with disabilities into private spaces but also solidify the barriers that hinder forms of sociability amongst this population. Such reality makes it difficult to create “a political consciousness”, as Cibele points out. Ableism, like sexism and racism, is structural (Alvares Ramírez, 2023). Cibele analyzes this structure by pointing out two of the factors that hinder the empowerment⁷ of people with disabilities: the lack of family participation in the process, and the limitations of the Municipal Council when faced with the Brazilian governmental structure. Cibele mentioned the lack of visibility and infrastructure of the Council where she acted as coordinator, a reality that I, as a researcher, confirmed when I attended the Council’s meetings. Each meeting was attended by a maximum of 20 people, most of whom were officials representing municipal departments (something that is mandatory in the equal composition of the Council). The participation of people with disabilities in the meetings was often restricted to the same individuals who voluntarily served two-year terms in the Council. For the size of the city where the Council in question is located, the numerical representation of people with disabilities at meetings was far below what was expected.

Studies have shown that Municipal Councils

homogenize participants, who, despite representing diverse organizations, come from a section of the population with higher incomes, levels of education, and experience with political engagement than national averages, and many are members of the civil service, which fundamentally limits representativity in Councils (Bronstein et al, 2017:94).

In addition, Cibele commented on the difficulties that arose from the deliberative nature of the Council where she was an administrator, which led to dependency and friction with the municipal executive power. According to her, public officials did not give due importance to the Council’s demands. Its meetings even took place in a physical space provided by a municipal office, due to the lack of electronic equipment at the place that was originally chosen to be the headquarters of the Council’s activities.

The issue of monitoring and complying with laws of accessibility and other rights of people with disabilities, not only at municipal level but in the entire country, was also part of Cibele’s testimony. She said that non-compliance of the rights of people with disabilities is widespread. Despite the fact that, since 1988, with the promulgation of the Democratic Constitution, Brazil has expanded the effective participation of political minorities in the decision-making tasks of the Republic, the obstacles that people with disabilities face are as much political and cultural as they are architectural or legal. This observation goes back to what Robert McRuer (2006) argues: it is not disability as a bodily marker that produces inequalities, but rather a society built on the bias of compulsory normality.

Cibele recalled one of the most common stereotypes when society refers to accessibility: only taking into consideration architectural adaptations. But what about the resources needed by people with other types of disabilities, who also face various barriers and need accessibility? This is a pertinent reflection that Cibele made at the end of her statement.

Laura, for her part, made more succinct comments than Cibele. For the second interviewee, although there are challenges regarding the work of the Council and the implementation of public policies for people with disabilities at the municipal level, all of this has also served as a motivating factor to continue her work and further awaken her activism. This is made evident through the expression “leverages attitudes” in the statement below:

As a general coordinator, I realized that public policies aimed at people with disabilities are quite slow, but we mustn’t stop fighting, because it’s the work of little ants, but it has results. Implementing [policies] is really more difficult, as there is always the classic excuse of a lack of resources. However, these experiences have contributed to my life as someone who leverages attitudes, because I realized that we must care and fight for our rights, and never remain silent (Laura’s testimony, my emphasis).

If, as the two interviewees and I realized, society still lacks the conditions for the real enforcement of public policies aimed at people with disabilities in general, then what can we conclude in regard to enforcing the rights particular to intersectional identities that involve disability, such as gender, effective? This is what I will analyze in the following section.

Intersectionality between gender, disability, and public administration

As mentioned in the introduction to this article, my personal experiences as a cisgender, white, educated woman with disabilities have led me to be aware of the multiple factors of oppression that weave through my day-to-day life. Particularly when I refuse to comply with the expectations of hegemonic femininity (to be a docile, submissive, and asexual woman), expectations that weigh, as a rule, on people with my bodily conditions. The more I challenge hegemonic structures and decide to occupy social spaces that are not designed for people with disabilities, the more resistance and reprimands I encounter in my endeavors.

By challenging the axes of oppression that constrain my human integrity, I create cracks in structures of thought and power that are designed to exclude me and other people who, like me, are not welcomed in hegemonic circles where discourses of power are reproduced.

Patricia Hills Collins and Bilge (2021) argue that intersectionality is an analytical tool that has the potential to unveil global asymmetries. By cracking universalisms

intersectionality provides a framework for explaining how categories of race, class, gender, age, citizenship status and others position people differently in the world. Some groups are especially vulnerable to changes in the global economy, while others benefit disproportionately from them (Collins; Bilge, 2021:33).

Women with disabilities are among those especially vulnerable. When race and class are placed as axes of oppression that constitute invisible existences, the political margins widen, throwing such women even further to the edges of a productivist system that makes efficiency a quality and disability a personal tragedy.

Women living in small and medium-sized cities who take up disability an agenda for struggle demonstrate that pluralizing the lenses for thinking about diversity and inequality is a sharp analytical and political tool for dismantling scenarios that perpetuate inequalities. Thinking about how this tool can be used, I decided to investigate the subjective experiences of women with disabilities who have occupied spaces that are not socially seen as “legitimate” for them and even for women without disabilities (Miranda et al, 2009), such as leadership and public administrative positions. This is the subject of the third category of analysis in my research, and both Cibele and Laura have stories to tell in this regard.

Being a woman and a person with disability is much more complicated [in terms of being a coordinator]. I’ll tell you that when I was coordinating the Council, and the vice-coordinator was a man, there were several situations in which we were together in a meeting with some authority, and instead of addressing me, as coordinator, [the public official] addressed the vice-coordinator, you know? Because, although both he and I have disabilities, he has a milder disability (a hip prosthesis) and he was standing, and I was in a chair. I’m a woman in a wheelchair, and he was standing and he’s a man. I was at a double disadvantage in this case. So I felt this differentiation. I think it was more because I was a woman than because I had a disability. There really is a male dominance. Men still have a greater influence, even over other women. Because, especially in the election that just took place, where Laura was elected, I felt that there was some preference for [name of other candidate deleted], even though we did a lot of work, lobbying [laughs] behind his back so that he wouldn’t be elected, but there were some women there who were in favor of him. Even though he’s a bit of a sexist, you know? So, I think it’s that old story, right, women are often enemies of women. We still don’t have that sorority thing⁸. The difference between a woman with a disability and a man with a disability is huge. We’re always at a disadvantage, even more so if you’re homosexual, for example. Imagine you, a lesbian woman in a wheelchair? And a black woman? What chance does she have? None. We women with disabilities are much more susceptible, not only to discrimination, but also to violence, in the literal sense of the word. What defense do we have? None. So I think what’s really lacking is greater awareness. We need to be more visible, right? For example, here in [city name deleted], we have 17 Councilors, and only three are women. Why aren’t there more women? There should be more women in the Council. But it’s because women don’t vote for women, you know? That’s the big problem. Now, even fewer women with disabilities will have a chance in party politics. I think we’ve made some progress in previous governments, apart from Temer’s and now Bolsonaro’s, because the latter is a real step backwards for all minorities, especially women, although he has toughened up the Maria da Penha Law a bit, which I think was one of the few good things he did. But I do think that we are experiencing a deconstruction of women’s rights as a whole. And I think that women with disabilities need to wake up more and take on more of the feminine power that they have. Because we still can’t [do the same things], it’s too limited. We need to be more aware of the power we women have, regardless of whether we have a disability or not. So, I think what is also lacking among us women, with and without disabilities, is sorority (Cibele’s statement, my emphasis).

Cibele classifies her situation as a “double disadvantage”, due to the fact that she is a woman and has a more aggravating disability than the vice-coordinator of the Council at the time. The vice-coordinator was preferred by some authorities as the right person to address issues related to the Council which, in fact, were to be discussed first and foremost with the general coordinator. The act of preferring to interact with a person who appears to have a “less aggravating” disability than the other exposes the ableism and the search for compulsory normality that crip theory points to in its theoretical framework.

Addressing the colleague of a woman with disabilities about matters that concern her is something I have also witnessed a lot in my life. This attitude implies: 1) the invisibility of the individual with disability, 2) their infantilization, and 3) the annulment of their autonomy and ability to interact socially, and to make decisions on their own. When the companion is also a person with a disability, but has a less aggravating physical condition, one can see the hierarchical gaze categorizing bodies.

In her book, Andrea García-Santesmases (2023) recounts the case of Spanish Member of Parliament Noelia Frutos, a person with disabilities, who heard the following sentence addressed to her by García-Gallardo, a politician from the ultra-right VOX party: “Le voy a responder como si fuera una persona como todas las demás”. The case went viral over digital social media. In García-Santesmase’s analysis, the support for Noelia Frutos by progressive sectors shows the Spanish left that VOX is not only sexist and racist, but also ableist. I would say that this triad is not easily disassociated; on the contrary, it is tied into a Gordian knot, which as such can only be untied by breaking paradigms, as intersectional, feminist, and crip approaches have sought to do.

When Cibele claims that male influence tends to be more prominent when leadership is concerned, she “cuts the Gordian knot” that kept her and her companions from positions of power within the Council. When I refer to Cibele’s agency, I am in dialogue with Patricia Hill Collins and Silma Birge (2021), Lélia González (1984), and Carla Akotirene (2019). Based on references from black feminism, I theorize agency as the capacity of individuals to act and make choices within the limits imposed by complex social structures that are riddled with oppressions. Collins and Birge (2021) recognize that specific forms of resistance and collective empowerment can emerge at these intersections. They thus offer a more complex and nuanced view of agency, which goes beyond traditional conceptions that center the agent as totally autonomous or completely determined by social structures.

Within social and institutional limits and constraints that were in place, Cibele, Laura and other allies achieved the goal of once again electing a woman for a public administrative position in the Council, beating the male competitor who is also a person with a disability.

Cibele also commented on the low representation of women in her municipality’s Council, and linked this to the lack of sorority among women (“women don’t vote for women”, in a broader sense, not only an allyship between women with disabilities)⁹. In fact, in Brazil, the low proportion of women in City Councils is still notable and occurs throughout the country. In 2020, the number of elected female Councilors represented 16% of the total number of representatives in Municipal Councils (Haje, 2020).

When addressing the category of women with disabilities in her testimony, Cibele demonstrated a broad awareness of the multiple intersectionalities that exist beyond gender and disability. She mentions race and sexual orientation, pointing to the fact that her status as a woman is the catalyst for the other markers. She believes that, especially in relation to social vulnerabilities and coping with violence, women with disabilities suffer more constraints than men in the same situation.

Laura in turn emphasized sexism, to the detriment of ableism, when she recounted the difficulties she experienced during her time in the Municipal Council.

I encountered obstacles because I’m a woman, not because I’m disabled, because we still live in a sexist society. I had meetings with authorities and realized that, because I was a woman, I was treated differently. I went to meetings with another Councilor, and even though I was the coordinator, the issues in question were dealt with by the other Councilor, because he was a man, and I felt like a decorative vessel. These events were exacerbated by my position as coordinator, because being a woman doesn’t give me the credibility I need. In today’s society, I believe that there is still a lot of prejudice against women and homosexuals, and in the end, a heterosexual disabled person will have more ease enforcing their rights. Because not only men, but people in general, don’t want to take a stand on anything when it comes to injustices and prejudices, they pretend that nothing is happening (Laura’s testimony, my emphasis).

Though she doesn’t mention the influences of ableism and the “hierarchies of disabilities”, in Laura’s experience, gender is also an overriding marker. This is evident in the way she is treated by authorities at meetings when also in the presence of a male vice-coordinator, even though she, Laura, is the coordinator. She also identifies that sexism worsened as she has moved up the Council’s administrative ladder (she previously held the positions of second secretary and vice-coordinator).

One of the barriers observed in Laura’s testimony was the attitudinal type, i.e. the behavior and reactions of other authorities to the interviewee’s position as general coordinator and her attendance at meetings that addressed matters of interest to the municipal Council. Finally, Laura implicitly acknowledged the issue of intersectionality (“[...] a heterosexual disabled person will have more ease enforcing their rights”), and attributed existing discrimination to a structural problem.

Nothing about me without me - considerations for an inclusive ending

This study was based on the intersections between gender, disability, and public authority, without neglecting to consider class and race, albeit tangentially, in the analysis. Due to the unprecedented nature of research in Brazil, I found it difficult to search for theoretical references that were able to give more support to the discussions I have addressed in this article. However, intersectionality, as Patricia Hill Collins and Silma Bilge (2021) argue, is not a ready-made structure. Looking at the Municipal Council in a medium-sized city, where women with disabilities seek political strategies to secure their rights and expand an agenda of struggle, has demonstrated how the axes of differentiation move, which means that there is no formula for analyzing such markers. Such mobility indicates that it is possible to act in the face of social and political inequalities. Although I have often divided intersectionality into pairs (gender and disability; disability and political activism; gender and public administration), I have tried to use the concept an analytical tool capable of promoting broader understandings of collective identities and political action (Collins, Bilge, 2021).

In addition to intersectional theories in general, I found a great deal of theoretical support for my argument in feminist disability studies, crip theory, some articles on Municipal Councils, and in research accounts of the experiences of women without disability in administrative positions. I was thus able to analyze the testimonies of the two interviewees based on these references, writing in the first-person to illustrate the motivations that led me to write this specific article.

The research highlighted the issue of “disability hierarchies” as an important element in ordering power relations among people with disabilities, socially defining those who would be considered “less incapable” than others. However, the research also made evident that gender is often imposed as an all-encompassing category.

In the area of public policies, the research sought to shed light on the slow implementation of legislation for people with disabilities, and the difficulty of mobilizing and raising awareness among these individuals. But these adversities are not limited to people with disabilities when we consider that the low level of social participation in the Municipal Council was also evident in another study on these public Councils (Bronstein et al., 2017).

Finally, an important point highlighted by the research was the possibility of agency for women with disabilities who, despite the social limitations observed, are making progress in acquiring a political and reflective vocabulary. This vocabulary is in dialogue with the greater visibility that feminisms have gained in our society.

In parallel to the feminist activism of the last two decades, movements for people with disabilities have also been increasingly intensifying. Always referring to the motto “nothing about us without us”, along with the first generation of disability studies, activism around the world culminated in the United Nations (UN) supporting the cause and establishing, in 1981, the International Year of People with Disabilities (IYPD). The aim was, and still is, to give visibility to this segment of the population and stimulate the creation of inclusive policies worldwide (Pereira, 2009).

The discussions in this article help to highlight the various points of intersection between feminism, disability studies, and the areas of public policy and administration. The article thus sheds light on the importance of these interactions for society, as well as the obstacles, of all kinds, to be overcome so that not only women with disabilities, but all social segments of society, can fully enjoy and exercise their citizenship.

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• 1
  This article was produced as a result of the research project titled “Experiences of women with disabilities in the administration of a Municipal Council”, carried out in 2019 during the Specialization course in Language, Culture and Media of the Department of Human Sciences, part of the campus of Bauru (SP) of the Paulista State University “Júlio de Mesquita Filho” (Unesp).
• 2
  I later learned that another woman with disability who attended the ordinary meetings at the time had also been an administrator of the same council.
• 3
  Narrative Analysis consists of a dynamic between researcher and subject, a way of collecting information on a topic with the objective of understanding the bigger picture (De Oliveira, 2008:3). The method, first disseminated in the field of linguistics, soon found applications in other fields of knowledge, such as feminist studies. It gained academic and political importance, as the method seeks to listen to the experiences of groups historically excluded from the production of scientific knowledge.
• 4
  The issue of race, symptomatically, was not addressed by the interviewees, since they are socially treated as white.
• 5
  The author prefers to use the term people with functional diversity rather than people with disabilities, but I have kept the term disability here to be consistent with the terminology used thus far in this article.
• 6
  The decolonial discussion will not be covered in this article, but it permeates the theories outlined here.
• 7
  For this article, I consider the definition of empowerment proposed by the educator and philosopher Paulo Freire to be pertinent. “Empowerment is, [...] for Freire, a process that emerges from the social interactions in which we human beings are constructed. As we critically problematize reality, we become 'aware', discovering gaps and ideologies; such awareness gives us ‘power’ to transform social relations of domination, power that leads to freedom and liberation” (Hamlin; Peters, 2018:178).
• 8
  According to Alves (2014:73): “we understand the concept of Sorority as the feminist union between women. [...] It is [...] the construction of existential and political alliances with other women, to contribute to the social elimination of all forms of oppression”.
• 9
  This finding was also mentioned in another study that considers a cultural issue, in which “[...] women themselves internalize that the political world was not their place” (Grossi; Miguel, 2001:175).

Edited by

• Reviewed by:
  Juliana Valente.

Publication Dates

• Publication in this collection
  18 Oct 2024
• Date of issue
  Sept 2024

History

• Received
  25 Oct 2022
• Accepted
  27 May 2024