Ableism in educational trajectories and the production of access fatigue

ABSTRACT

This article aims to examine the implications of the ableism in the production of access fatigue as it is experienced by black disabled women throughout their educational trajectories. The research is based on feminist disability studies and disability studies in education. The information was obtained through a sociodemographic form and in-depth autobiographical interviews applied to 12 participants from different regions of Brazil. The results show that ableism exists at an intersection with other oppressive systems and is associated with the neoliberal belief that striving for rights is an individual responsibility. This creates structural and interpersonal barriers to claiming the right to access within educational contexts and generates access fatigue.

Keywords
Access Fatigue; Ableism; Educational Trajectories; Neoliberal Policies

RESUMO

Este artigo tem o objetivo de identificar as implicações do capacitismo na produção da fadiga de acesso presente nas trajetórias educacionais de mulheres negras com deficiência. A pesquisa foi embasada nos estudos feministas da deficiência e nos estudos da deficiência na educação. As informações foram obtidas por meio de formulário sociodemográfico e entrevistas em profundidade de caráter autobiográfico com 12 participantes de diferentes regiões do Brasil. Os resultados apontaram que o capacitismo, na interseção com outros sistemas opressivos, associado à compreensão neoliberal de que a busca por direitos é de responsabilidade individual, cria barreiras estruturais e interpessoais à busca por acessibilidade, gerando fadiga de acesso.

Palavras-chave
Fadiga de Acesso; Capacitismo; Trajetórias Educacionais; Políticas Neoliberais

Introduction

The inclusion of students with disabilities is still a challenge in both basic and higher education. From a legal point of view, the Convention on the Rights of Persons with Disabilities — CRPD (Legislative Decree No. 186) (Brasil, 2008a), the Brazilian Law on the Inclusion of Persons with Disabilities (LBI) (Law No. 13,146, of July 6, 2015), and the National Policy on Special Education in the Perspective of Inclusive Education (PNEE) (Brasil, 2008b) guarantee the inclusion of students with disabilities at all levels of education, including higher education.

In basic education, according to data from the Continuous PNAD (Brasil, 2022), the illiteracy rate of people with disabilities is 19.5%, while that of people without disabilities is 4.1%. Between ages 15 to 29 years old, 11.7% of people with disabilities are illiterate, while only 0.5% of people without disabilities of the same age are illiterate, which accentuates that people with disabilities continue to face barriers even after the CRPD approval. Although access to education is similar in elementary school (95.1% and 99.4% for people with and without disabilities, respectively, between 6 and 14 years old), between 15 and 17 years old, it drops (54.4 and 70.3 for people with and without disabilities, respectively).

In higher education, we can also highlight the Brazilian law that provides the special program for access to federal higher education and teaching institutions for black, brown, indigenous and quilombola students and people with disabilities, as well as those who have completed secondary or primary education in a public school, which has guaranteed access to university for a quota of these students (Law No. 14,723 of November 13, 2023, which amends Law No. 12,711, of August 29, 2012). Regarding continuance, the Accessibility Program in Higher Education (“Programa Incluir”) stands out. It was created in 2005 by the Ministry of Education (MEC) to contribute to the continuance of students with disabilities in the university. Its main objective is to foster the creation and consolidation of accessibility centers in Federal Higher Education Institutions (Federal HEIs) in order to implement the inclusion of people with disabilities in higher education, eliminating architectural, pedagogical, behavioral, and communication barriers (Brasil, 2013).

One of the great challenges for expanding the participation of people with disabilities in basic education and higher education is to ensure collective access. Collective access is one of the principles of Disability Justice¹, a field of knowledge and political activism that assumes that no body or mind should be left behind (Berne et al., 2018). Although the perspective of collective access does not deny the importance of universal design to expand the participation of people with disabilities, it expands it by incorporating the intersectional and political perspective of disability (Hamraie, 2013). Thus, collective access points out that it is not enough to insert people with disabilities in a specific context. It is necessary to consider that, depending on their multiple intersections with gender, sexuality, race, ethnicity, age, regionalism, and social class, even if all technical accessibility apparatus is provided, they may still not feel like they belong to that context (Gesser; Mello, 2023).

This article is part of a larger research project entitled “Ableism, disability, and intersections in education: a look at educational trajectories,” in which researchers from Brazil and Canada participated. It aims to study the implications of ableism in the educational trajectories of black women with disabilities from an intersectional perspective. In this article, we seek to understand the implications of the barriers in educational trajectories resulting in the production of access fatigue among black women with disabilities.

In this project, we chose to use the analysis of the trajectories proposed by Pierre Bourdieu (1996). Trajectories are defined as the materialization of relationships between agents and the forces present in the field. The author states that “unlike common biographies, the trajectory describes the series of positions successively occupied by the same writer in successive states of the literary field” (Bourdieu, 1996, p. 71, emphasis added). Also, the trajectory Bourdieu proposed is based on the assumption that the individual action of the subjects (habitus) is closely related to broader social contexts (fields). Hence, Rosana Glat (1989, p. 31) states that life stories, or, in the case of this research, educational trajectories, “however particular they may be, are always reports of social practices: of the ways in which the individual inserts himself and acts in the world and in the group of which he is part”.

The term access fatigue, the central analytical category of this text, was defined by Annika Konrad from a relational perspective (centered on the interactions that people with disabilities need to establish to teach others how to build access so that they can participate in social spaces). The author states that access fatigue is “the everyday pattern of constantly needing to help others participate in access, a demand so taxing and relentless that, at times, it makes access simply not worth the effort” (Konrad, 2021, p. 180). Konrad points out that access fatigue also describes the physical and mental exhaustion that results from the work of seeking access, which requires, among other things, that people with disabilities build an ‘ideal self’ to be worthy of the access they need to participate in social spaces. Also, the author also emphasizes that access often depends on the communication capacity of each person, as well as the difficult and risky rhetorical work of navigating power relations and institutional barriers. This makes the need to help others participate in access a demanding and daily practice that can accumulate to the point of making people with disabilities give up on access (and their education) altogether. Finally, Konrad highlights the proximity of this concept to others, such as “forced access” as described by Mia Mingus (2017a), since requesting access requires that people with disabilities often have to establish relationships with people who are strangers to them and with whom they do not wish to relate.

Although we pay attention to the importance of considering the relational dimension of access fatigue in this article, we propose an intersectional and socio-political definition of this term. This definition of access fatigue considers that, besides the interpersonal relationships already very well described by Konrad (2021), there is a neoliberal capitalist context that holds each person individually (or at most their family) responsible for seeking the means to build access for the person. Thus, without denying the importance of all people engaging in the construction of more accessible spaces for people with different body variations (physical, intellectual, sensory, and psychosocial), we consider it essential to break with the ableism present in the context of relationships between individuals, in institutions, and the structure of society as a whole. Ableism reiterates the myth of the independent subject, delegitimizing the production of relationships based on dependence and interdependence inherent to all of us. Moreover, ableism delegitimizes people with disabilities — who are positioned as unable — to claim access. We also consider that understanding access fatigue should consider the intersection of disability with race, gender, sexuality, and social class. This is because disability is an intersectional experience (Garland-Thomson, 2002; Gesser; Block; Mello, 2020). Also, the social markers of difference contribute to hierarchizing people. It legitimizes the access of some and delegitimizes that of others, which makes it essential that they are considered in research in the field of disability. Furthermore, we also emphasize the importance of, from the dialogue with intersectional feminism, incorporating intersectionality as an analytical sensitivity (Akotirene, 2019) and as a fundamental principle for promoting social justice (Collins; Bilge, 2021).

In short, we add other layers besides the relational one to the concept of access fatigue by Annika Konrad (2021). Access fatigue states that the fatigue generated is not only because of having to help people build access, but also because access is still read, in a neoliberal capitalist context, as a responsibility of the individual. Thus, negotiating access in a context with an understanding that each person must seek the means to guarantee it individually or with their family can become very tiring. Another layer refers to the need to analyze access fatigue from an intersectional perspective since some social groups throughout history, depending on the intersections with gender, race, sexuality, disability, and social class, were positioned as hierarchically inferior and, therefore, as less deserving of access, which may delegitimize the claim for accessibility.

Finally, we understand that it is impossible to understand access fatigue without reinforcing the idea that it is a consequence of the ableism that underlies the lack of access. Ableism is understood as “[...] a prejudiced posture that hierarchizes people according to the adequacy of their bodies to bodynormativity. It is a category that defines the way people with disabilities are generally treated as unable” (Mello, 2016, p. 3272). It also has a structural and intersectional character since it is present throughout the social fabric and crosses and constitutes our conceptions of politics, justice, and care (Gesser; Block; Mello, 2020), in addition to affecting, to different extents, people marked by the intersections of race, gender, sexuality, age, and social class (Gesser; Block, 2024).

Method

This research had as its conceptual and theoretical framework the field of feminist disability studies and disability studies in education. Concerning feminist disability studies, the dialogue of this field with black, intersectional, and decolonial feminisms, with the crip theory (Kafer, 2013; McRuer, 2006) and the emancipatory perspective of disability (Oliver, 1992) stands out, intending to carry out studies WITH people with disabilities and not ABOUT them (Moraes, 2022). Regarding the field of disability studies in education, its contribution to deconstructing the standards of normality that cross and constitute education systems stands out, hindering the inclusion of students with disabilities and other marginalized groups (Connor; Gabel, 2008). Moreover, Baglieri et al. (2011) advocate the need to return to education to break with discriminatory activities and create educational strategies aimed at recognizing and valuing human diversity. From these references, we sought to produce knowledge aimed at the crippling of education (rupture with the historical process of colonization and pathologization of disability) and strengthening of educational processes whose principle is the anti-ableist perspective.

Mapping and research processes

In order to get to know the participants better and understand how they embody their social markers of difference, we used two research strategies: the first was a sociodemographic form to characterize the population studied so that we could consider the specificities related to disability and its intersectionality. Then, in-depth interviews were conducted with an autobiographical character with the 12 black women with disabilities so that we could understand dialogically the most significant events of their educational trajectories concerning the ableism suffered, associated with other oppressive systems, and how they impacted their experiences in the school context, from the early years to higher education.

Participants

Twelve black and disabled women from different regions of Brazil participated in the research. As for the inclusion criteria, we list: being a woman (cis or trans), identifying as a black person (black or brown), being a person with a disability (even if this has only been diagnosed in adulthood)², being in or having finished higher education, being over 18 years old, having studied in Brazil, accepting to participate in the research, and signing the Informed Consent Form.

The research participants had varied ages and types of disability. Concerning age, it ranged from 21 to 68 years old. Regarding the types of disability, four (4) are autistic, two (2) of which have other associated neurodivergences, two (2) are blind, three (3) have a physical disability, two (2) have a hearing disability, and four (4) have a physical disability, one (1) of which has an associated psychosocial disability. Data such as the course studied will be presented throughout the analyses when relevant to contextualize the narratives.

Field research and knowledge production procedures

The participants were initially invited through the networks of the authors of the project, which includes a Center for Disability Studies of Universidade Federal de Santa Catarina (UFSC) and some collectives of people with disabilities with whom the authors have been establishing partnerships, such as the Helen Keller Feminist Collective, the Brazilian Association for Action for the Rights of Autistic People — “Abraça,” and the Black Lives with Disabilities Matter Collective. Afterward, the snowball sampling technique was also used, in which the subjects initially accessed indicated other people they knew to also participate in the study and so on (Flick, 2012). Finally, we also published an invitation to participate in the study on social media.

At the beginning of the field research, we were still officially in the COVID-19 pandemic. Also, for the sake of the participants’ accessibility, it was decided that interviews would be conducted online through the Zoom platform. All 12 participants opted for this modality. After signing the informed consent form (ICF) and responding to the Sociodemographic Form (both available on the Google Forms platform in accessible text versions for screen readers and also in Libras [Brazilian Sign Language]), interviews were scheduled, seeking to adjust the time according to the participants’ availability. The interviews lasted between 1h20min and 2h15min, and the possibility was offered that it would be completed in two meetings, depending on the needs of the participants. As one of the interviewees preferred to answer the questions in Libras, the interpreter service was made available to ensure her participation.

It should be noted that the interlocutors directly participated inconstructing the interview script by choosing for themselves what would be most relevant to narrate. That means they first read the project and the proposed points to be addressed in the conversations and contributed by removing or adding relevant issues to the interview script. Second, the themes listed in the scripts were brought up by the interviewer so that we could have similar content to be analyzed across the interviews. It is important to emphasize that, in the meeting with the participants, we initially leave them free to tell their stories without further interference. These moments were fundamental so we could access stories that gave meaning to their past experiences to have material for a “narrative analysis” (Gibbs, 2008).

Ethical procedures

This research was approved by the Research Ethics Committee on Human Subjects of XXX (CAAE — 59648022.9.0000.0121, Opinion No. 5.478.919). All ethical principles recommended by Resolutions 466/12 and 510/2016 of the National Health Council were ensured. All participants read and signed the Informed Consent Form which contained information about the research. To ensure anonymity, fictitious names were assigned to the research subjects, except three of them, who requested identification with their first names.

Procedure for analyzing information and narratives

The stories of the participants’ educational trajectories were analyzed keeping in mind the narrative analysis procedures of Graham Gibbs (2008, p. 80), for whom the information and interviews must receive “careful analysis of topics, content, style, context and the telling of narratives” of people, so that we can understand “people’s understanding of the meanings of key events in their lives or their communities and the cultural contexts in which they live.”.

To this end, the interviews were first transcribed and reviewed through readings and re-readings. The initial skimming of the text allowed the researchers to perceive the most central issues at stake in the narratives of the interlocutors when they told about their processes of inclusion and exclusion in the educational trajectory. From a selection of scenes and experiences relevant to the research and, mainly, more recurrent and significant for most participants, we sought to reflect in an interpretative way, in the light of the readings conducted and keeping in mind the objectives of the research, what we had to say about these stories. What Annika Konrad calls access fatigue became this article’s central analytical category and analytical axes were then organized according to what we found interesting in relation to or in dialogue with this concept. The analyses, then, were organized into two thematic units: a) access fatigue as an effect of ableism in the educational trajectories of women with disabilities, and b) the relationship of neoliberal policies with access fatigue in the school experiences of black women with disabilities. Before the article was submitted, it was shared with the participants so that they could validate (or not) the way their narratives were analyzed.

Results and discussion

Although we know that the complexity of human life is challenging to transpose into the text and that the imbrication and transposition of all the issues we are bringing are almost impossible to understand if separated, the analytical exercise of this text does so. The discursive effort to categorize the individually experienced ableism leading to participants’ experiences of access fatigue, to then address the more formal socio-political issues that maximize this violence and contextualize them in our time-space, is here a resource that dialogues with the place of enunciation of this journal³.

Access fatigue as an effect of ableism in the educational trajectories of black women with disabilities

From the narratives of the women participating in this research, we seek to understand how ableism was present in their educational trajectories, expressed through attitudinal, architectural, and pedagogical barriers and has produced as an effect the constant need to claim access rights, both in basic and higher education. Besides, reports also showed that the experiences of the interviewees are inseparable from the confrontation of sexism and racism, systems of oppression that mix with ableism and intensify oppression and social exclusion. In this first thematic unit, we will cover two sub-themes. The first refers to the difficulties of negotiating access; the second addresses the effects of lack of access — putting enrollment on hold, changing majors, and dropping out of programs.

About the difficulties in negotiating access

The difficulties of negotiating access were a constant in the educational trajectory of the women interviewed, from basic education to higher education. The statements showed that there was an idea, which remains even after the Convention on the Rights of Persons with Disabilities (CRPD) approval and even the Brazilian Law on the Inclusion of Persons with Disabilities (LBI), that it is up to the person with disabilities to seek the means to ensure their access to knowledge and spaces of the school and/or HEIs. The statements of Helena, Lúcia, and Karla show this issue.

[in college] so I tried to talk to several professors. Some said that they could not do anything, that the schedule of activities was like that, that they could not change it

(Helena, 32 years old, autistic).

I think that my institution that I am inserted in, the means of evaluation, the people with whom I live, with whom I have to deal, I think they make my life very difficult

(Lúcia, 21 years old, physical and psychosocial disability).

[professor’s name] I had a lot of extra work because she, she did everything in very fine print on her slides, everything colorful with little drawings, but she didn’t, she didn’t describe anything she had in there for me, it was just: “Oh, that aside, what I put this date here was when this happened […]” I’m like, but what date? You know?

(Karla, 45 years old, blind).

This understanding that the person must adjust to the environment and not the other way around prevented women with physical disabilities, for example, from participating in important living spaces, such as break time, lunch at the university restaurant, and cultural activities. The statement of Maria, a woman who was born with a physical disability that made her tiptoe, shows the lack of physical accessibility to have access to the break room in the last two years of elementary school, when she began to have difficulties going up and down stairs, and the consequences that this had on her social and affective life, so essential in school life:

[...] I had this architectural barrier of the stairs, in my school. Yeah […] and then […] what I did was go up and down […] but I remember getting very tired this way, and […] so much that it was the break I didn’t go down, yeah, I stayed inside the classroom, some friends of mine even brought things for me when I wanted to eat something, so I didn’t have to go up and down, but I didn’t have a resource. [...] But, yeah, thinking about it, there is all the exclusion, right? Because you think about […] in, when you think about the break room, you think, the flirting, the gossip of what is happening there […] I did not have it! [shaking her head negatively]

(Maria, 29 years old, physical disability).

Karine, a deaf woman who communicates through sign language, studied Language/Libras (Brazilian Sign Language) during her undergraduate course, which facilitated her access to the disciplines that made up the curricular matrix of her course. However, due to the absence of interpreters, she had difficulty accessing other spaces, such as cultural activities and disciplines offered outside the course in which she enrolled. Her story provides a relevant example for us to think about intersectionality because it shows, amid the issue of accessibility, the fact that she is perceived as “the only black deaf person in the course.”

Yeah, and then I tried, like, complementary courses and such, and then I tried to access these courses, but then there was no interpreter, so I could not participate. And then I realized that like, ‘oh, Karine is the only black deaf person’, right? [...] Also a matter of culture, theater, yeah, I wanted to be together, but then there was no interpreter. [...] these cultural issues, music, yeah, art, artistic issues, yes, I needed to have an interpreter too, right? Because then I also wanted to access these places because I, as a citizen, wanted to, but then in these environments, I had difficulty with the issue of accessibility

(Karine, 35 years old, deaf person).

Beatriz, a 32-year-old woman, currently with an amputated foot, who during a period of her undergraduate degree was on crutches due to a foot infection, reported needing to be carried by her colleagues to access the second floor of the building where she studied, because there was no elevator, according to her statement “At [name of HEI] also in the beginning, in the early years my friends too, right? Because I arrived, my foot infected, so I, I arrived on a crutch, so my friends to climb the stairs “oh, get up there Beatriz, I’ll carry you”.

This reality of having to be carried as a result of architectural barriers was also part of the daily lives of other women with physical disabilities. For example, Maria, had to be carried by a firefighter in a situation in which the elevator, which broke down very often, was working when she climbed into the building to access a laboratory but was broken at the time of descent. Maria’s trajectory in higher education was quite challenging since, even though she knew her rights as a person with disabilities and sought to claim them from the coordination of the visual arts course, she often had her demands ignored. There were no great adaptations for her; there was not even a bathroom when she started the course. The room did not hold Maria’s chair, and the galleries were not accessible, so she had to look for ways to “get by.” She entered college through PROUNI. She got a 100% scholarship. She started the course on crutches. The college had a very steep ramp. She complained to the coordinator. Her initial feedback was that the higher education institution (HEI) was meeting the requirements. After many conversations between Maria and the coordinator, she moved the class to the building next door, which generated much discomfort and caused her to put her enrollment in the course on hold for a semester. When she returned, the class had been allocated to a more accessible building. However, the classes in the laboratories were in another building, which had an elevator that broke down quite often. Maria tells us about the day she had had enough and ended up allowing her friends to film and post on social networks the firefighters carrying her for an entire floor on the school’s stairs. The access fatigue to which Maria reached was greater than the shame of the public exposure of her condition.

Then there was a day that [...] going up to ceramics class, the elevator was working normally, when it was the time to leave, the elevator was not working and [...] then I had to be carried by the college firefighter. Me and my chair was like this [Maria shakes her head negatively] I cried a lot! I was very frustrated because it was like a floor... And then I felt super, superbad, but my friends recorded it, right? [...] Anyway, when my coordinator didn’t help me... yeah, I posted on the internet and with that I went viral [...] yeah [...] with this video of the firefighters carrying me down and me just crying heavily. Yeah, I was very [...] the decision to post this was conflicting, but I had had enough [...] enough, like, there was also nothing I could do about it, yeah, and I wanted to study! And I was tired of getting there, and the elevator being broken, right? And then I went viral, I did a story for [Name of TV channels] came here to my house, it was a circus like this [...] Yeah, anyway, [...] after that, after this circus, the elevator never broke down again. Yeah [...] and then I didn’t have any more problems with the institution, look!

(Maria, 29 years old, physical disability).

In this situation, it is clear what Mia Mingus (2017b) calls forced intimacy: the experience of the daily expectation that people with disabilities share personal parts of themselves to survive in an ableist world. It is expected, then, that people with disabilities share very personal information, in which they were exposed to social bodynormativity with unknown people, to achieve basic accessibility. This also includes forced physical intimacy, especially for those who need physical help where their bodies need to be touched. Maria had to go through an embarrassing moment, being carried by an unknown person, and have this moment filmed and disseminated so that the institution where she studied could enable access to the college’s facilities. Vanessa, another 39-year-old interlocutor with one of her legs amputated, also reports this experience at the university. She told us that “you have to talk your whole life, right? And for, for, for a random person and because, like, you know, just because […] things are not how they should be”.

The fatigue experienced by Maria was quite frequent in the educational trajectories of the women interviewed. Karla emphasized how much this solitary work of claiming accessibility has consequences on her management of life:

[...] it’s all so difficult, yeah, it’s fighting every day, it’s “killing a lion every day”, this wears me out, the time I’m there running after accessibility I could be studying, you know? […] It is very […] it is a short time that I keep studying to fight for my rights for a long time, I’ve already had enough, I have been there for 4 years, it is inadmissible!

(Karla, 45, blind).

This reality experienced by Karla was also identified in the study by Merchant et al. (2020) with people with visual impairments or who used wheelchairs, who reported spending much time having to check the accessibility of the lecture space and the route to the places of activities and events at the university. The authors analyzed the effects of barriers on the academic lives of people with disabilities, emphasizing the narrative of meritocracy. They point out that “if an individual cannot easily attend a conference, or has to spend extra time and labour simply organising access to a building, then there is little time left for the production of high-quality research outputs” (Merchant et al., 2020, p. 10).

Another phenomenon observed, especially among women with invisible disabilities, is that of doubting their disability, which can be observed more clearly in the reports of Helena and Lúcia. This process resembles the notion of pushing people with disabilities into the “disability closet” (McRuer, 2006) and is often used to deny accessibility. In this direction, Helena reported that, although some professors were attentive to the access demands she needed, there was “[...] a specific professor who said, he did not say it to me, but he told a class [when] I was not there at the time, that there were people out there saying that I was autistic to get attention because now autism is in fashion”. Lúcia’s report points out that some professors and some library professionals doubted her disability. Below, we bring Lúcia’s report, in which she explains the effects of people doubting that she is a person with a disability:

It is very uncomfortable to go through these situations because it always seems like you have to fight so that you are not seen as a liar, as an opportunist. [...] Uhm, no, but that’s really it, everything is very tiring for you to access because you always have to be [...] asking, you always have to be explaining yourself, and even then, as my disability is somehow invisible, it is very embarrassing, because the person doubts you, the person thinks you are trying [...] yeah, that you are lying, that you are exaggerating, that you are wanting to step in front of someone [...] they look at you badly, they bar you, they doubt you. And it is very tiring to have to constantly go head-to-head like this

(Lúcia, 21 years old, physical and psychosocial disability).

Resuming Karine mention of being “the only deaf black woman in her Libras class,” we also see intersectionality more explicitly in Joana’s experience. Joana, a 38-year-old autistic woman, after dropping out of medical school because it required much interaction with her colleagues, went to computer engineering, where she was the only woman in her class. Joana stated that she heard comments like, “You are a woman; you don’t know how to program! You have no credibility.” After finishing computer engineering school, she returned to medical school, where she sought to mask his autistic characteristics to suit the demands of the course.

We will not join the long discussion that involves autism, race, and gender. Still, it should be mentioned that, in general, autistic women usually mask their forms of communication and social interaction, as well as their stims, much more than men. For autistic people, the individualization of accessibility is also in the burdensome task of masking, of pretending normality to have greater social acceptance. It is clear here that the intersection between gender and disability potentiates access fatigue since Joana, to be accepted and legitimized in a male course, needs not only to mask her autism but also her femininity.

Karla also identified that the access fatigue experienced in the psychology course, which she dropped out because she did not have her accessibility demands guaranteed, was related to the intersection between racism, ableism, and sexism. When explaining this situation, she said that she thinks [the exclusion] “it was all a little: disability, women, and skin color [...] the weight I carry on my back for being a woman, for being black, and for being blind”. Lúcia reported a similar situation in the HEI where she studies. Her course is eminently male, and professors and colleagues often invalidate women. Thus, being a woman is an additional element that produces difficulties when it comes to requesting accessibility.

Narratives such as those of Joana, Karla, and Lúcia show how access fatigue has an intersectional dimension since race and gender can also delegitimize the struggle for collective access by people with disabilities, as pointed out by the authors of Disability Justice (Berne et al., 2018; Hamraie, 2013). In the following topic, we will point out some effects of the lack of access on the educational trajectories of the research participants.

Effects of lack of access: putting enrollment on hold, changing courses, and dropping out

Access fatigue was experienced throughout the educational trajectories of the women interviewed and had important repercussions with regard to continuance in higher education. Among these, we identified cases when the participants, in situations of physical and emotional exhaustion due to the non-offer of the resources they needed or the non-acceptance by colleagues or professors, ended up putting the enrollment on hold for a semester, changing the major, and even dropping out of a program.

Maria told us that she studied in a building that was not accessible to her. When she got the classroom moved to an accessible building, it happened that this was an older building and far from the laboratories. According to her, due to the discomfort that this situation produced in the interaction with her colleagues, she decided to put her enrollment on hold for a semester. She reported that, in this process of changing the building, she did not feel welcomed by the class, as can be seen in her statement: “It was an embarrassment because I remember being very [...] embarrassed because [...] all my colleagues would have to go to another building because of me. And then I felt really bad. I did not feel welcomed by the class” (Maria, 29 years old, physical disability).

Lúcia was approved to attend the physics program. She began to develop disability during the COVID-19 pandemic, a period when it was challenging to contact the university’s accessibility sector. Due to the difficulties of the college adapting the classes and laboratories of the bachelor’s degree in physics, she had to transfer the course to a Teaching Degree in Physics (to be a school teacher), even though she wanted to remain in the bachelor’s degree in physics to be a scientist:

Yeah [...] my major I had to end up changing to a teaching degree, that then the education courses are easier to be adapted than courses in which I really have to do some math, and as I had already spent half the course in the bachelor’s degree I already had all the physics even to attend the teaching degree, only the education courses were missing, which was not a choice I wanted, it was a choice because I could not adapt [...] and it was a difficulty that made me have to leave the bachelor’s degree course and enter the teaching degree

(Lúcia, 21 years old, physical and psychosocial disability).

On the other hand, participant Karla has always dreamed of being a psychologist. She managed to be approved in the entrance exam for a private college, where she started the course. At this college, she reports being unaware of an office focused on providing accessibility services for people with disabilities. Thus, she had to drop out of the program due to a lack of accessibility (texts accessible to a screen reader, with description of charts and tables, tests in an accessible format) and also for the ableism she suffered from some professors, such as statistics, who failed her by half a point and, even showing that his evaluation was wrong to the course coordinator, he did not modify her grade. This happened around 2013–2014 when the Convention on the Rights of Persons with Disabilities was already incorporated into the Brazilian Constitution of 1988. This difficulty that Karla had due to lack of access triggered panic and depression in her. Thus, even though it was her dream to graduate in Psychology, she dropped out of the program. As a solution to Karla’s continuance, the college suggested that she take only two courses per semester instead of providing the material adapted to her needs:

Yeah [...] so, I went to [name of the college] first to study psychology, that my first desire was to be a psychologist, right? And the second option has always been social work. But[name of the college], unfortunately, they have a very big problem of lack of accessibility. Especially for blind people, right? Then I had 8 courses there, and of the 8 courses, I had no material. Then of these 8 courses I failed in 2, 1 by half a point, which was [...] statistics, and the other by 8 tenths. And it upset me a lot because if they didn’t support me, they could at least have given me another opportunity to take a test since there was no material. And my entire class ‘Karla, file a lawsuit or something’. And I started to feel really bad. I started to panic, I cried all the time, I started have depression. Then I had to leave the groups of my friends there, anyway, then I stopped studying! [...] They, [name of the college] for me [sic] to study, for them I had to do one course, two per semester, so I wasn’t going to do that. So for them, it was easier for them to teach me 2 courses than 8. But they were not going to do anything more than that [...] The only thing I was demanding was material, nothing else, the rest for me I got by on my own, as I always did. But not even that, so [...] [I dropped out]

(Karla, 45 years old, blind).

At the time of the interview, Karla was attending the eighth semester of the social work course at a public university. This other university has an informational accessibility office that transforms the material into accessible texts. However, she still faces barriers related to the difficulty some professors have communicating with this office, as they do not always send the material in time to be turned into an accessible format. She tells us that the support of some colleagues, who claim access together with her, made her reach the eighth semester, and she believes she will be able to graduate.

The participants’ narratives showed that the lack of accessibility produces fatigue and interruptions in their educational trajectories. This shows how much we need to build educational processes that assume that people with disabilities exist and are present at all levels of education. It is a great challenge for accessibility to be understood and guaranteed beyond the relational dimension, with educational contexts having several strong institutional policies that involve the entire school and/or academic community.

The participants, through their narratives, also pointed out that the biomedical model is very present in the educational context, dictating how pedagogical practices are reproduced in this space, which corroborates the studies by Baglieri et al. (2011) and Bock and Cunha (2021). Thus, the interviewees’ narratives show how these medical and empowering views on disability outline their educational experiences. Thus, every semester, there is a need to remind the program administration or the professors about their needs for adaptations, ask to change classrooms, set deadlines for carrying out the evaluations, or facilitate rearrangements in the functioning of the classroom. Therefore, the need for accessibility arises from an individualized and medicalized deviation from the practice built for a typical subject instead of encouraging the school and university community to engage in constructing educational processes aimed at welcoming people with different characteristics and ways of learning.

The relationship of neoliberal policies with access fatigue in the educational trajectories of women with disabilities

From the analysis of the interviews, it was possible to identify how much access fatigue is related to the neoliberal capitalist context since these women, throughout their trajectories, depended heavily on family members, colleagues, and, sometimes, professors who, even without school or HEI having support services to ensure accessibility, individually sought to help them to be able to access knowledge and follow their educational trajectories. Even those younger interviewees, who were part of basic education and higher education after the CRPD approval, needed, many times, to claim their needs to guarantee accessibility individually and hope that the professor, who is most often not trained for this, will be individually sensitized to implement them.

When describing her trajectory as a person with physical disabilities who had to have her leg amputated, Paula reports some comments she has heard throughout her life. They visualize a perspective that positions disability as a problem of the individual and their family.

So, why the person with disabilities, right? It’s her family’s problem”. I’ve even heard it from people close to me, like, from me saying: Oh, but you need to have a disability quota, there has to be a place for the disabled? Right? There has to be... “Oh, but why? So, who told you to be born with a disability? It’s your problem!”I’ve heard it from people, from friends of mine, I’ve heard it. So, yeah, this is very impactful, it is very serious because people really agree with it

(Beatriz, 32 years old, physical disability).

Many reports reiterated the assumption that accessibility is an individual problem, which caused students to have, throughout their educational trajectories, many difficulties in negotiating access. This issue has already been addressed in the previous topic. It indicates that, in addition to the relational scope brought by Konard (2021) and explored in the previous topic, access fatigue also denounces the structural implications of neoliberal capitalist values. Among them is meritocracy or the entrepreneurial individual, based on a notion of autonomy that borders on self-sufficiency. Such values have already been analyzed in the processes of inclusion in the labor market (Aydos, 2021). Still, they are also strongly present in the experiences of people with disabilities in the educational context.

The standards of normality that cross and constitute education systems (Connor; Gabel, 2008) corroborate so that the responsibility for accessibility belongs to the subject (Bock; Cunha, 2021). Accordingly, this is also the perspective that characterizes current neoliberal capitalism, which encourages competitiveness and displaces the understanding of the disability of the social sphere to center responsibility for its achievements and failures on the subject (McRuer, 2021; Aydos, 2021). Thus, this person must seek the services needed to participate in the market, exempting the State from providing them (McRuer, 2021).

It was also possible to identify, from the interviewees who have been people with disabilities since childhood, that mothers are protagonists in the movement to claim their daughters’ access and negotiate with the school and professors, especially concerning the period of basic education. Whether in the search for schools, in the performance of school activities, in homework, and in the demands of learning common to this school period, the attribution of verifying whether or not there are accessibility services and whether the spaces are adapted is still very much within the family to guarantee full school experiences. In this understanding that care should be reserved for the private sphere and seen as a fundamentally female activity, it is noted that both ableism and familism end up supporting neoliberal educational policies (Gesser; Zirbel; Luiz, 2022).

When the interviewees talked about their friendships in terms of basic education and higher education, it was often reported that friends constituted an essential support network for coping with barriers. They act as substitutes for the accessibility services that schools and HEIs should provide. As highlighted in the previous topic, Maria had very important support from colleagues in basic and higher education. In college, for example, the support of colleagues was essential to expose the lack of access and demand adequate support. When addressing this issue, she highlighted, “[...] I think I created more solid relationships with the class”.

Karla reported that, in the social work course, she could count on four friends who always aimed to jointly claim the accessibility of texts and other materials with professors. They also sought to remind professors about Karla’s needs on trips, remind Karla about the work she should post in the virtual learning environment, and assist her when it was not arranged in an accessible way. In short, they have done what is not yet accessible to Karla.

What happens, there is already a test, there is an assignment to do, so the professor says ‘look, you have to read such a text’. She goes ‘Karla, have you received this text yet? Is it accessible?’, I say ‘No, I haven’t received it yet’. [...] ‘I already talked to the professor and she did not return’, then she ‘Oh professor, Karla already talked to you, did you not return?’

(Karla, 45, blind).

Maria and Karla’s narratives show the importance of support networks in the face of the non-implementation of an accessibility policy for students with disabilities. Therefore, what is observed is that the solidarity and companionship of colleagues, in many cases, play the role that would be competent for implementing legal rights and public policies.

In the case of professors, important figures in educational experiences, the interviewees say that many of them were resistant to making adaptations and were confused about how to meet the demand for accessibility, which points to the need for universities to offer support to professors as well. Lúcia, for example, tells about the helplessness in her academic experience since, even though she had the understanding of some professors and talked to them about the need to customize their assessments, many of them did not know how to solve the issue.

So they don’t have this thing of adapting, they kind of leave it up to you, talk, communicate your needs and the professor can solve it. But the professor has no guidance as well. Even the platform itself should warn the professor that there is a student with a disability in the class, and all the professors I went to talk to, none of them were signaled in any way that I would be in the class, that I would need to have some activity adapted for me. So I only really counted on their goodwill, and that [...] they don’t either, they don’t know how to deal with it, right? If I do not know, imagine them

(Lúcia, 21 years old, physical and psychosocial disability).

Thus, it is clear that the trajectory of the interviewees is marked by struggles both individually and with support networks composed mainly of family and friends, some of them also victims of oppression. In this dynamic, the negotiation with the school, the university, and the professors takes place as a strategy to continue studying. It is noteworthy that it is vital to circumscribe the search for access in a context marked mainly by ableism and neoliberal capitalism, which are structural systems of oppression that are related to each other (McRuer, 2021; Gesser; Block; Mello, 2020; Brown, 2020). These systems articulate and delegitimize people with disabilities to demand accessibility in universities. That means the appreciation of skills such as productivity and efficiency, associated with the meritocratic notion that investment in education must revert to the neoliberal capitalist system, and the idea that disability is an individual problem causes people with disabilities to be delegitimized when claiming the right to be in basic education and higher education.

Final considerations

This research aimed to identify the implications of the ableism present in educational trajectories in the production of access fatigue among black women with disabilities. From the information obtained, we focused on the sub-themes: access fatigue as an effect of ableism in the educational trajectories of women with disabilities and the relationship of neoliberal policies with access fatigue in the educational trajectories of women with disabilities. The dialogue between feminist disability studies and disability studies in education was fundamental to understanding how the normalization and pathologization processes reiterate ableism and increase access fatigue.

The analysis of the educational trajectories of the research participants indicates that how society perceives and relates to disability, still based on the perspective of the biomedical model, influences the educational context from basic education and goes on to higher education. In the narratives on pedagogical activities, learning processes, the relationship with the architectural space of the school and university, and socialization with colleagues and professors, we can see ableism crossing the educational experiences of students with disabilities.

The difficulties in access and access fatigue experienced by the interviewees denounce an ableist society and uninformed of laws, in which the neoliberal capitalist context, intertwined with ableism, takes as an assumption to individualize and hold the person with disabilities responsible for the search for access. If, on the one hand, from a legal point of view, the Convention on the Rights of Persons with Disabilities, the Brazilian Law on the Inclusion of Persons with Disabilities, and the National Policy on Special Education in the Perspective of Inclusive Education guarantee the inclusion of students with disabilities at all levels of education, what can be seen, in practice, through the reports, is that there are difficulties in implementing an institutional policy aimed at guaranteeing accessibility that meets what is provided for in the legal scope in both basic and higher education.

The interviewees’ narratives pointed out that a central element for understanding these difficulties is the fact that accessibility is understood, based on the articulation between ableism and neoliberal policies, as a problem of the subject, of the person with disabilities, and it is up to them to adjust to the context to remain in the education systems. From this, support networks, centralized in the family, close friends, and some professors, are, in many situations, the main means to enable access, think about adaptations and accessibility services and, thus, contribute to these women being able to continue in their educational trajectories.

It is noteworthy that this study, although it has brought important contributions to the understanding of the experience of being a black woman with disabilities, has some limitations. The search for participants occurred through the researchers’ networks and calls on social media. The interviews were conducted online, which may have prevented or greatly hindered the participation of women with lower socioeconomic conditions. Therefore, although women have presented the crossing of gender, race, and disability, all were able to access higher education, and none reported financial issues as the greatest difficulty for continuance.

Conducting new studies and seeking to interview women who had their trajectories interrupted by socioeconomic issues can provide fundamental elements to complexify the understanding of ableism that permeates the field of education with a focus on the elements that generate access fatigue. Also, as the interviews were conducted with women from different regions of Brazil, a country of continental dimensions, it was impossible to establish relationships with a specific region.

Moreover, even if we had participants who studied in public and private schools and universities, it was not the object of the research to compare these two contexts, which can be the object of investigation in future studies. Although we have identified these limitations and the fact that the number of interviews is not representative of a specific population, it is relevant to consider that all women participating in the research suffered the effects of ableism and access fatigue throughout their educational trajectories.

It is necessary that education systems want people with disabilities and anticipate their presence so that they do not have to spend as much effort to claim access. People with disabilities exist, have increased in representation in basic education, and have also been increasing in higher education. Finally, implementing the CRPD and LBI, which guarantee the elimination of barriers and the provision of support, is essential so that no one needs to beg/claim accessibility as a favor.

Notes

• 1
  In round table 04, of the VII ENADIR — National Meeting of Anthropology of Law, which was attended by Anahí Mello, Helena Fietz, and Gabriela Rondon (2021), Mello and Fietz proposed the translation of the term “Disability Justice” to “Justiça Defiça”.
• 2
  The initial proposal of the research was that the participants already had the diagnosis since the early years of basic education. However, due to the difficulty accessing participants to obtain the diagnosis since childhood, the difficulty of obtaining participants interested in participating, and also the interest of women who were diagnosed only in adulthood to participate in the study, it was decided to expand the possibility of participation.
• 3
  We would like to point out that other articles contemplate more faithfully the proposal of narrative writing aligned with the epistemological and methodological exercise of ResearchWITH (PesquisarCom), so well developed by Marcia Moraes (Moraes, 2022). In these, we also bring the co-authorship of the interlocutors of this research in writing.

Availability of research data

The dataset supporting the results of this study is published in this article.

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• Editor in charge
  Carla Karnoppi Vasques

Publication Dates

• Publication in this collection
  28 Oct 2024
• Date of issue
  2024

History

• Received
  09 Apr 2024
• Accepted
  11 June 2024