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Changes and challenges presented to educational institutions by people with disabilities

Rising enrollment reflects greater inclusion in education, but institutional policies and pedagogical practices need to be improved

Fabio Passos

According to the latest data published by the Brazilian Institute of Geography and Statistics (IBGE), the number of individuals with disabilities in Brazil stood at 17.2 million in 2019, representing 8.4% of the country’s population. Due to educational disparities, these individuals face greater difficulties finding jobs and have lower incomes compared to peers without disabilities (see graph). However, there has been a gradual shift towards inclusivity in both basic and higher education since the adoption of the United Nations Convention on the Rights of Persons with Disabilities in 2006 and the enactment of the Brazilian Inclusion Law (LBI) in 2015. In addition to opening new research avenues, the need for inclusion has challenged education institutions to revisit their educational policies and practices and develop accessibility strategies for different types of disabilities.

In higher education, students with disabilities were the last group to benefit from affirmative-action legislation. Law no. 13,409, which mandates a minimum number of spots at federal universities for students with disabilities—or quotas, as they are referred to in Brazil—was enacted six years after the promulgation of Law no. 12,711, which created quotas for people who self-identify as black, brown, or indigenous and attended primary and second education at public schools (see Pesquisa FAPESP issue nº 308). These affirmative-action policies have helped to expand the presence of individuals with disabilities in federal higher education institutions. According to the latest survey published in 2019 by the Brazilian Association of Directors of Federal Higher Education Institutions (ANDIFES), the number of university students with some form of disability increased significantly from 31,200 in 2014 to 55,800 in 2018, a notable 78.8 percentage-point improvement. The number of blind students more than tripled during the same period: from 177 in 2014 to 616 in 2018.

As defined by the LBI and the UN Convention, which has been incorporated into Brazilian legislation through two constitutional amendments, persons with disabilities “include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” Emerson Damasceno, a legal scholar and chairman of the Autism Committee of the Brazilian Bar Association (OAB), explains that these two legal instruments are the primary sources of policy guidance regarding healthcare and education for people with disabilities in Brazil. In addition to these, the Brazilian legal system also includes legislation addressing the rights of individuals with specific disabilities. For instance, Law No. 14,127, enacted in 2021, specifically addresses the rights of individuals with monocular vision.

Rodrigo Cunha / Pesquisa Fapesp

“Our legislation takes a modern approach to inclusion. But the real challenge lies in effectively implementing these rights,” says Damasceno. Some articles of the LBI are still pending regulation, he notes, which means they are not yet being applied in practice. One example is Article 2, which calls for people with disabilities to be assessed using the biopsychosocial model. “This model takes into account not only the impairment of an individual’s body functions and structure but also social and environmental factors, personal traits, and limitations on social life to determine whether a person has a disability and measure the degree of impact from that disability,” explains Damasceno.

Regulating this specific article of the LBI is crucial, he says, as it provides guidance on matters such as recognizing government employees with disabilities, reserving spots in civil service examinations for people with disabilities, and implementing affirmative action in higher education. The biopsychosocial model is based not only on medical examinations but also on the impact of a disability on an individual’s participation in society,” explains Damasceno, who himself became disabled in 2014 after being involved in a traffic accident. As an example, he references the case of a neurodivergent student—a term used to describe individuals whose neurological development or function deviates from societal norms—who applied for an affirmative-action spot at a higher education institution in Minas Gerais. The evaluation committee determined that her neurodivergence was minimal, leading them to conclude that she did not face significant barriers that would place her at a disadvantage compared to the broader pool of applicants. Consequently, the position was awarded to another candidate with more complex impairments. “A person who has lost a finger may experience prejudice, but the obstacles to integrating into society are greater for an individual with spinal cord injury,” he says, arguing that full implementation of the LBI would be of interest to society as a whole.

Advances in science have shaped legislation
The concept of disability remains a subject of debate even today. Before the mid-eighteenth century, the dominant prescientific conceptions were characterized by superstitious or charitable views that often involved notions of divine guilt or punishment. It was during the nineteenth century that medical science began to frame disability as a pathology. “Science viewed disability as a bodily, physical, and social impairment, with an emphasis on the individual and a policy focus on rehabilitation,” explains Marivete Gesser, a psychologist and coordinator of the Disability Studies Center at UFSC. However, from the 1960s onward, influenced by the humanities and social sciences, a different model emerged. This new perspective recognized that the obstacles faced by individuals with disabilities were primarily societal in nature. “This fresh perspective propelled scientific progress by shifting away from an individualistic and pathologizing viewpoint, instead considering disability as being neutral if social barriers were removed,” explains Gesser.

Fabio PassosIn a 2022 paper, Anahí Guedes de Mello, an anthropologist at UFSC, highlights how feminist criticism and theories of care from the 1990s have played a pivotal role in expanding the social model of disability, eventually leading to the development of the biopsychosocial approach. This model, influenced by the disability rights movement, was initially introduced by the World Health Organization (WHO) and later incorporated into the LBI in 2015. One of the prominent voices in this debate is philosopher Eva Feder Kittay at Stony Brook University in New York, who has done seminal work on healthcare and disability, particularly cognitive disability, within the field of philosophy. Kittay herself is the mother of a woman with cognitive disability. Mello, who was diagnosed with deafness during childhood, argues in her paper that the biopsychosocial approach to disability represents a substantial advancement, as it takes into account both biology and social contexts, and both individual and environmental factors. According to the researcher, cultural studies, especially queer studies, have recently led to the development of a new theoretical framework known as “crip theory.” In her paper, Mello writes: “Crip theory challenges the processes that normalize able-bodiedness and offers a cultural model of disability that rejects the notion that absence of disability is a natural state for every human being. Ableism prevents one from realizing that it is possible to walk without legs, hear with one’s eyes, see with one’s ears, and think with every inch of one’s skin.” The term “ableism” was coined between the 1960s and 1970s and was introduced in Brazil in 2011 through the work of researchers like Mello.

Building on feminist disability studies and these new avenues of thought, psychologist Karla Garcia Luiz is currently doing research on women with complex care needs for her doctoral thesis at UFSC. “I examine their experience through the lens of complex care needs, which includes physiological care as well as other elements such as access to culture, employment, and education. The notion of complexity is associated with the broader concept of living needs,” explains Luiz, who was born with multiple congenital arthrogryposis and suffers from joint contracture. As a mother of a one-year-old baby, one aspect of her research focuses on how women with disabilities experience sexuality and their access to reproductive rights. “While there are numerous studies on caregivers of people with disabilities, rooted in the field of sociology of labor, there are few that examine care receivers like myself. Our lives are a constant negotiation with our caregivers and family members. Through my thesis, I aim to shed light on these overlooked perspectives,” says Luiz.

Raul de Paiva Santos, a nursing researcher and a scholar of the disability rights movement in Brazil, is researching the recent phenomenon of individuals with disabilities becoming influencers and activists on social media, particularly during the pandemic. Santos himself became disabled during childhood and underwent years of treatment within Brazil’s National Healthcare System (SUS). He recalls how his alma mater, the University of Vale do Sapucaí, had no affirmative-action policies during his time as an undergraduate student between 2009 and 2012. “The university questioned my ability to take internships and complete my degree. They also conveyed the idea that I should be the one taken care of instead of taking care of others,” he recalls. After graduating, he realized that he had never come across a nurse who, like himself, used crutches. “I began to face barriers that, years later, researchers in the humanities would refer to as ‘ableism,’” he recalls. “When I enrolled in a doctoral program at USP in 2019, the university’s only concern was ensuring that I could physically access the campus. I was provided with the contact number of a security guard who would walk me to and from places,” he says. “But it was also there that I was exposed to theoretical frameworks from anthropology that would lead me to embrace my identity with pride. My reading assignments helped to expand my horizons,” says Santos.

Rodrigo Cunha / Pesquisa Fapesp

The increased representation of individuals with disabilities in academia has sparked scientific progress and spurred institutional change. Data from the Brazilian Federal Agency for Support and Evaluation of Graduate Education (CAPES) reveals a significant rise in the enrollment of students with disabilities in master’s and doctoral programs, with admissions increasing from 998 in 2017—the first year data was collected—to 2,800 in 2021 (see graph above). Meanwhile, the 2018 School Census and Higher Education Census, published by the National Institute for Education Studies and Research (INEP), reported that 6,700 teachers in basic education (0.30% of the total) and 1,600 professors in higher education (0.43% of the total) had some form of disability. Although still modest, the presence of individuals with disabilities has posed a challenge to educational and research institutions, compelling them to develop policies that promote accessibility and provide necessary support.

Aline de Assis Lago, a professor of animal science at the Federal Institute of Education, Science, and Technology of Bahia (IF BAIANO), was conducting research on genetic improvement in rabbit breeding at the campus in Santa Inês, a city in the backlands of Bahia. But due to a weakened immune system, depression, and anxiety, she often found herself having to take time off from work. When the Covid-19 pandemic hit Brazil in March 2020, in-person activities were suspended, and Lago began working remotely. To the surprise of her treating psychiatrist, her overall health improved by staying away from social interactions, in contrast to the experiences of many other patients. “It became evident to my psychiatrist that I had some form of undetected neurodivergence,” she recalls. After several months of investigation, she was diagnosed with autism, Attention Deficit Hyperactivity Disorder (ADHD), and high-ability. This prompted her to request recognition as an employee with disabilities. Unfortunately, the institute lacked the necessary policies to accommodate her request and provide the associated benefits, such as reduced working hours without a decrease in salary or the option to transfer to the Salvador campus for medical treatment.

“My journey of self-recognition as an autistic individual went hand in hand with my efforts to advocate for policy change within the institution,” Lago explains. The initial support for her efforts came from students. “When they learned about my diagnosis, many of them identified with me and sought my assistance,” says Lago. After her initial unsuccessful attempts, in 2022, the university finally adapted its policies and recognized Lago as a person with disabilities, granting her transfer to the campus in Salvador. She now benefits from sessions with a psychologist, psychiatrist, neurologist, and physiotherapist, which have helped her to “understand her own functioning.” “I was the first person with a late autism diagnosis at IF BAIANO to request recognition as an employee with disabilities. At the time, there was a general lack of knowledge about how to handle such cases,” recalls Lago, who currently holds the positions of Associate Dean for Research and Assistant to the Graduate Programs Coordinator.

Fabio PassosThe experiences of Lago and Alessandra Souza Silva, a professor of special education at the same institute, who also received a late diagnosis of Autism Spectrum Disorder, prompted IF BAIANO to establish a neurodiversity and inclusion committee that has been tasked with identifying gaps in institutional policies and proposing solutions to foster a more inclusive environment. “Our efforts are having an impact beyond our expectations,” says Lago, recalling that her first lecture on the subject, organized in 2021 by the National Committee on Health and Quality of Life at Federal Institutes, drew an audience of approximately 500 people.

“In academic institutions, administrative barriers are the most challenging to overcome,” says Sandro Luiz de Andrade Matas, a physician who created the Accessibility and Inclusion Center at the Federal University of São Paulo (NAI-UNIFESP) in 2006. He explains that the institution previously lacked formal policies on inclusion and accessibility. The first step was to establish a multidisciplinary group to develop a campus remodeling program. “Since 1978, when I began undergraduate studies at UNIFESP, I had encountered numerous physical barriers and difficulties in navigating the campus,” says Matas. Having had polio as a child, he now relies on a cane or crutches for mobility due to the resulting sequelae. “Today, UNIFESP has elevators, ramps, and tactile surfaces to aid visually impaired individuals. The challenge now is to ensure our curricula and lecturing are accessible for students with different disabilities,” he says. For instance, the university encountered a situation where an undergraduate class had a student with hearing impairment, and a professor proficient in sign language was required. However, the existing regulations mandated that professors hold a doctoral degree. “Seven years ago, we didn’t have any professors in Brazil with a doctoral degree who knew sign language. We had to modify our bylaws to get around this obstacle,” he recalls, noting that the university currently has seven professors who know sign language. Matas believes that the situation is likely to improve in the coming years due to a new resolution aimed at enhancing support for students and faculty with disabilities. This will involve investments in teaching aids technology, educational training, accessibility, communication, awareness-raising, services, and infrastructure. Furthermore, an affirmative-action system for faculty members with disabilities, approved by the institution in 2022, is set to come into effect later this year.

Scientific articles
GESSER, M. et al. Care for disabled people with complex dependency: A matter of justice. Revista de Estudos Feministas. Vol. 30, pp. 1–14. 2022.
MELLO, A. G. et al. Aleijar as antropologias a partir das mediações da deficiência. Horizontes Antropológicos. 28 (64), Sept.–Dec. 2022.