Representations of blind characters in contemporary literature¹,^{2 3}

Abstract

This article, linked to the field of Cultural Studies in Education, is part of the doctoral thesis of one of the authors and aims to analyze representations of people with visual disability in contemporary literature. Research data include the selection of work written by blind people or work with blind characters highlighted in the narrative. From the theoretical articulation to the analysis, we conclude that, although visual disability is historically represented as a defect that belittles the subjects, some blind authors represent blindness as a characteristic of subjects who have singular forms of being and of living in the world. Thus, we verified the appearance of other ways of representing blindness as being more than the idea of limitation or a problem to be corrected.

Keywords
representation; visual disability; cultural studies in education; inclusion

Resumo

Este artigo, vinculado ao campo dos estudos culturais em educação, é um recorte da tese de doutorado de um dos autores e objetiva analisar as representações de pessoas com deficiência visual na literatura contemporânea. Os dados da pesquisa incluem a seleção de obras escritas por pessoas cegas ou com personagens cegos em destaque na narrativa. A partir de articulação teórica e análise, concluímos que, embora a deficiência seja historicamente representada como um defeito que inferioriza os sujeitos, alguns autores com deficiência visual representam a cegueira como uma característica de sujeitos que têm formas singulares de ser e estar no mundo. Assim, verificamos a emergência de outras formas de representação da cegueira para além da ideia de limitação ou problema a ser corrigido.

Palavras-chave
representação; deficiência visual; estudos culturais em educação; inclusão

Visual disability and representations

Disability is a concept built up by discourses, given that its meaning was set up by certain ideas belonging to specific space and time. We do not refer to the materiality of blindness and low vision, but to the way they are represented in the social realm. The various ways of “seeing” blindness are what are interesting to this study, whose source are narratives of contemporary literature in which representations of visual disability abound. As we will see further on, many ways of representing the blind and people with low vision are similar to those used for many centuries, changing only the focus. In this sense, the notion of the psychic norm remains, which is treated as “psychism” in the present article.

The bodily materiality of disability is present; however, it is necessary to question the discourses and the way we deal with themes such as the identity and the difference of people with disabilities. The dictionary definition of the word “disability” already tells us a lot about it. For example, in Portuguese, we use “deficiência” for deficit or lack of something. In this article, it is not a question of denying the materiality of blindness or low vision, but of questioning the discourses that produce the place of incompleteness, deficit and incapacity.

A brief incursion into fragments of antiquity until the end of the modern times shows that blind people (low vision was invented only in the twentieth century, when medical parameters created this classification) were seen as defective, personifications of sin that should live in isolation from society or worse yet, be promptly eliminated. These people represented disability, human misery and all its ills, and so should be set aside. There are widely known reports that the blind lived in a state of beggarliness, and an example of this is the blindness of Oedipus and the consequences that this brought to his life (Amiralian, 1997).

On the other hand, blindness represented a different way of seeing the world, as the blind were thought to see beyond what psychics could see. They were considered oracles, "psychics" who could foretell the future and ward off curses and plagues by means of supernatural powers. This is also evident in some characters in Greek literature, such as Tiresias, who, when blinded, acquired powers to predict the future and act like a prophet or an oracle (Vygotsky, 1991).

These representations of visual disability - and other sensory limitations - became less powerful in the late eighteenth century, when scientific conceptions, especially of medicine, began to explain the phenomena once justified only by the supernatural. From that time on, disability began to be seen as a body defect, as a disease that could be cured and/or lessened through medical treatment. In this context, blindness is now understood as a disease of the “body” and not of the “soul”. With the discourse that science would be the main way to cure bodily imperfections, medicine has become the main field of knowledge for determining how to deal with and treat visual disability.

The educational processes to which blind and visually impaired people were submitted were undeniably influenced by these medical and therapeutic models. Firstly, the education of visually disable people started to take place in specialized institutions, where they were sometimes confined, segregated from social life and “free” from the dangers they could cause to society and to themselves, according to the reasoning of that time (Lobo, 2008).

In the early nineteenth century, special schools were set up in which blind people and people with low vision could study. In this case, they did not board at the schools, however they continued to have separate schooling from sighted students, on the grounds that they needed specific care and special education, according to their deformities and learning capacity (Lobo, 2008).

This scenario changed in Brazil at the beginning of the 21st century, when policies for the inclusion of students with disabilities into ordinary schools came into force. Some institutes specializing in the education and rehabilitation of blind people are still working, such as the Paranaense Institute for the Blind, the São Rafael Institute in Belo Horizonte, and the Benjamin Constant Institute in Rio de Janeiro. Likewise, there are special schools aimed at the education of the blind and people with low vision, although the number of these special education establishments has been decreasing in recent years.

However, since the nineteenth century, medical and therapeutic knowledge has guided the concept of visual disability, which has implications for school inclusion policies, based on the notion of disability as a “defect” to be cured or lessened and on the practice of normalization. Thus, in order to measure and establish parameters, the clinical point of view is still the current criterion for defining visual disability; In this case, the Brazilian Inclusion Law defines:

c) visual disability: blindness, in which visual acuity is equal to or less than 0.05 in the best eye, with the best optical correction; low vision, which means visual acuity between 0.3 and 0.05 in the best eye, with the best optical correction; cases in which the sum of the visual field measurement in both eyes is equal to or less than 60°; or the simultaneous occurrence of any of the above conditions⁴

(Brazil, 2015, p. 2).

The Brazilian Law for the Inclusion of Persons with Disabilities makes it clear, in article 2, that the impediment of the person with disabilities comes not only from their physical limitation, but also from the barriers that obstruct their full interaction with the environment (Brasil, 2015, p. 9). Still, visual disability is socially understood more as being a complete or partial disability of vision than as a body difference.

Therefore, it is possible to notice that visual deficiency is mostly represented as the lack of vision, although other concepts have been gaining ground in this scenario. Increasingly, subjects with visual deficiency and low vision have being demanding other identities in search of the right to difference.

Based on this, we present the objective of this article: to analyze representations of visually impaired people in fictional and autobiographical narratives and to discuss the propositions, tensions and the possibilities that they present. To achieve this goal, we could draw on several theoretical “lenses”, but we have opted for cultural studies in education, a potent field of research to develop analyses involving education and culture. Thus, the concepts developed in this article, such as visual disability, representation, identity and difference, come from this matrix of thought. Strictly speaking, this field makes it possible to investigate the connection between culture and representation, since culture refers to shared meanings. Thus, in terms of cultural studies in education, language is nothing more than the privileged means by which we give meaning to things, where meaning is produced and exchanged. Meanings can only be shared by common access to language (Hall, 2016, p. 17).

Representation processes produce “truths”; build, maintain, or dissolve identities and differences, that is, there are power relations acting directly to produce these truths, identities, and differences which we can identify ourselves with or differentiate ourselves from (Silva, 1995, p. 200). Ways of naming, for example, certain people or events are at the center of social struggles for meaning, and are part of the processes of how we see ourselves and how others see us. Stuart Hall asks how, after all, languages ​​work, and simply states that they operate by means of representation; In other words, languages ​​are systems of representation:

In language, we make use of signs and symbols - whether they are resonant, written, electronic images, musical notes or even objects - to convey or represent our concepts, ideas and feelings to others. Language is one of the means through which thoughts, ideas, and feelings are represented in a culture. Representation by language is therefore essential to the processes by which meanings are produced⁵.

(Hall, 2016, p. 18)

These processes of representation are not made vertically or without resistance, but occur in arenas of conflict by meanings and social positions. Attempts to maintain hegemonic discourses, through practices that produce stereotyped representations of visually disabled people, are called psychicism, as proposed by Mianes (2015, p. 91). Such representations of blind and visually disabled people are effected by a set of discursive practices that present visually impaired people as incapable, physically inferior, worthy of pity. According to Mianes (2015), psychicism reduces disability to problems caused by physical disability and frames people with visual disability as eyes that cannot see. Psychicism, therefore, is linked to a series of representations that come from discourses produced about visual disability that disqualify the blind and people with low vision.

To conceive visual disability as divine punishment, a world of darkness, absence of images, colors and visuality is a psychic practice, a way of making blindness the impossibility of enjoying the beauties that exist in the world. Such practices are reductionist and based on the sighted norm. Moreover, in psychism, it is common to treat the blind and people with low vision as human beings who display inordinate kindness, above average intelligence and morally superior values, or, on the other hand, as extremely wicked, apathetic, or naive beings.

The centrality of the discussion is to denaturalize the responsibilities of all behaviors and reactions of the individual regarding their visual disability, making undue generalizations or reductions of the subject to the cause-consequence relationship. In psychicism, the set of representations constantly associates the subject's behavior or reaction to his sensory deficiency.

Psychicism influences the relationship between people, often leading to certain ways of treating the blind and people with low vision, which relates to the representations made about them. Domingues (2010, p. 27), in an article on the subject, states that people with blindness are often treated in a grotesque, ironic or hilarious way everywhere they go. Many of these observed attitudes generate laughter, discomfort, embarrassment, animosity and other reactions.

We cannot say that these situations occur everywhere and all the time, but they do happen often. Attitudes towards individual differences may vary according to cultural context and also have to do with the posture of the subjects. Therefore, it should be emphasized that even people with visual impairment reinforce derogatory ways of representing the group.

This brings us to an interesting debate, as each person or group begins to claim the right to adopt identities. Using the plural concept, we can say that identities are the intersections between the way we are seen and the way we see ourselves, that is, they are processes that produce subjectivities and allow us to assume certain social positions. That is, they are temporary adhesions that act on our subjectivity and build our discursive practices (Hall, 2003, p. 14).

The identity, thought collectively, from the point of view of one or more groups that use it as a factor of grouping and a form of belonging, can generate a considerable sense of security, because the subjects are protected by joining certain communities. These processes have implications for the lives of these subjects and the community to which they (momentarily) belong. However, thinking of community requires pondering with Bauman (2003, p. 10) the dilemma that:

There is a price to pay for the privilege of “living in a community” - and it is small and even invisible only as long as the community is a dream. The price is paid in the form of freedom, also called “autonomy”, “right to self-affirmation” and “identity”. Whatever the choice, one thing is won and another is lost. To have no community means to have no protection; reaching the community, if this happens, could soon mean losing freedom. Security and freedom are two equally precious and desired values that can be well or poorly balanced, but never entirely adjusted and without friction. However, no recipe has been invented to date for this adjustment⁶.

On the one hand, the community allows for political and meaning-fighting issues to be strengthened, as in claiming rights and respecting different ways of life. However, as Bauman warns that no community means no protection; reaching the community, if that happens, it could soon mean losing freedom.

Visual impairment is much more complex and widespread than loss of visual acuity or visual field, not being absolute darkness, for example. More than that, we will see how the struggles for representations are set up in literature.

Among countless possibilities to demonstrate the representations of visual impairment, the fictional and autobiographical narratives have greater reach and power in the present circulation and consumption conditions of cultural products and artifacts. And since research is about making choices, we chose here to investigate representations linked to narratives written by the blind and people with low vision, published in the publishing market. Therefore, we chose narratives of visually impaired subjects written by those who lived or experienced this condition.

Literature and disability: theoretical and methodological possibilities

This article is part of the doctoral thesis by the first author (Mianes, 2015) with guidance from the second. The analytical aim of the thesis was autobiographical narratives of the blind and people with low vision. In the analyzed work, in addition to the identity and difference processes investigated, the processes of representation about visually impaired people in contemporary literature became apparent. According to the data obtained, it was possible to verify that blind characters are represented in different ways: as being incapable; strangers; defective; heroes; or subjects with similar abilities to others, where disability is merely a mark in their life experiences. That is, the thesis addressed a variety of data and was the starting point of the present analysis, for which we selected some work and excerpts, studied in the thesis.

The chosen approach aims to analyze the processes of representation of blind people in contemporary literature, where the representation - from the field of cultural studies in education – is the main concept used. In addition, the social model of disability (Shakespeare, 2010) supported the analysis, due to the fact that limitation or body difference is not treated as a problem but as a possibility and, moreover, as an alternative to life, resistance or opposition to the speech of the medical models.

In this article, some of the work was written by visually impaired authors, which confers a perception of the world related to the groups investigated here. This is not to say that these works are better, worse or more legitimate; however, their authors' experiences, points of view and representations are unique.

In the autobiographies analyzed in the thesis, the authors had low vision and were blind. In the case of the pieces of work chosen to make up the material in this article, the disabled authors are all blind - not because this was an option, but because of the selection of the material. In addition, the excerpts all address blindness issues without mentioning low vision. Thus, we analyzed representations of blind subjects because low vision was not a theme found in the texts.

Some of the work that makes up this article was chosen after the publication of the thesis and are fictional, which makes them no less valid with regard to the representation of blind people, since such discourses are present in various social spheres, including literature, whether autobiographical or fictional. Therefore, this is a step forward in relation to the thesis, given the expansion of the analyzed materials, including fictional works.

Another interesting fact is that the authors of the analyzed pieces of work have different nationalities, are from different times and social contexts. Even so, there are countless recurrences in the texts, which points to the considerable strength of these representations in the social clash between the psychic discourses and those that oppose them. Therefore, although it is a small cutout in relation to the number of books with this theme, the study sample is considerably consistent.

Thus, the pieces of work chosen as being analytical material for this article are: Thunder Dog, Michael Hingson's (2012) autobiography; Jorge Luis Borges's conference (2009) entitled “Blindness”, Luzes do arrebol⁷, fictional work by the author Waldin de Lima (2001), who was blind; Seeing red, by Lina Meruane (2015); and All the Light We Can't See, Anthony Doerr's novel (2015).

In order to verify the investigations already made and consult the bibliography about the representation of the blind and characters with low vision in literature, we accessed one of the main sources of research in the country: the Portal of Journals of the Coordination for the Improvement of Higher Education Personnel (Capes)⁸, a body linked to the Ministry of Education (MEC). The following search terms were used: “visual disability”, “representation” and “cultural studies”. We found fourteen results, which indicates that there is much to be explored along this path.

There are many books with characters – main characters or not - with visual impairment; and although there are exceptions, there are certain more or less common representations of the ways of life, conflicts and daily life of these subjects. Amiralian (1997, p. 28) refers to some books with blind characters, presenting a number of possibilities: blindness as punishment or redemption; as difficulty or as sublimation of kindness; as a means of claiming independence; the right to culture; sexuality; to be what one is, etc. What is common between these possibilities is the fact that most character conflicts relate to the relationship with sighted people. Thus, it is clear that all this has a relational character.

Among the many alternatives used to make the representations that stigmatize people with visual disability, autobiographical narratives, in different artistic and cultural formats, play a fundamental role. With the social and technological transformations of society, more and more subjects, who are considered different, can put their own views forward about the world around them.

In the mid-1990s, the slogan “nothing about us without us”⁹ was used to demonstrate the need for people with disabilities to participate in decision-making concerning their lives and the direction of policies aimed at guaranteeing their rights. In this sense, the idea was to provide a main role to these subjects, where they would start to value life experiences and peculiarities of people with disabilities.

One of the ways to “offer” the main role is through life stories, presented on television, radio, the internet and autobiographical narratives, available in blogs, books or other formats. In the aforementioned doctoral dissertation, we analyzed the existing identification marks in the autobiographical narratives of the blind and people with low vision. One such mark is the consideration of visual disability not as a defect but as a possibility to view the world differently; In other words, representations about oneself are constructed in such a way as to highlight the good thing about not seeing, leaving aside clinical notions that people with disabilities are defective, incapable, victims of inferior impediments.

This is not to say that all visually disabled people think alike; many of them take on a psychic position. It is not a matter of thinking in a Manichean way, but in pointing out that some of the representations constructed by blind people and people with low vision have been counteracting and even dissolving some stigmas, albeit intermittently and with internal and external conflicts.

It must also be said that in autobiographical narratives of visually impaired people, each narrator builds his or her character and chooses what he wants to say or not about himself. Fundamentally, the author reports events in his life, which can deviate from the bias of "fiction" but also create a "fiction of himself", a distinction that we can hardly make at a distance. For Arfuch (2010, p. 186),

the narrative character of life… introduces a radical instability: a story, or an autobiographical account, can never be completely conclusive, no matter how its true character was substantiated. But this metonymic slip from one story to another, from one position of enunciation to another, is nothing but a manifestation of the very fluctuation of identity, of this tension between the same and the other that spans the existential experience¹⁰.

Be as it may, narratives about themselves do not belong only to the author; they are also collective work in that they express the discourses and ideas circulating in a given time and space (Arfuch, 2010, p. 101). The subject who tells his life does so according to his own point of view; It is he who edits his existence and chooses what should be said or what should be silenced and remembered, depending greatly on the memories and the direction given to the experienced facts. Therefore, the narratives and life experiences recorded by blind and people with low vision are part of a discursive plot that may or may not present forms of resistance or proposition of other possible representations.

Exploring materials and weaving analysis

We began to analyze the materials chosen for this investigation without losing sight that infinite analyzes and different uses could be undertaken, as each researcher “sees” and “explores” the materials according to the peculiarities of his/her work. By this we mean that the following section is part of a perspective of the material, and that it would be possible to raise many questions other than those that will be presented.

A qualitative analysis of the narratives of the books was carried out, in which the discursive sphere is favored so as to investigate the representations coming from the material researched; read the Works; and select their main ideas, singularities and discursive recurrences. Recurrences depicted in appropriate excerpts were selected for this article to analyze the representation of blind people in literature.

Studies on literature and difference/disability, used as a theoretical framework for this analysis, were developed by Dowker (2013) and Kirchof, Bonin and Silveira (2013). These authors analyzed representations of disability in literature and based on recurrences found in the analyzed works, concluded that many of these representations bring the idea of overcoming disability, heroism of the disabled person or non-conformity with the “abnormality”.

Valle and Connor (2014) and Silveira and Kirchof (2016), by analyzing the relationship between literature and disability in social and educational processes, showed how representations are discursively constructed and have implications for identity narratives and the positioning of the subjects.

In Luzes do arrebol,¹¹, the author Waldin de Lima (2001) writes a novel about a boy named Ronaldo, who has aversion to blindness and ends up going blind. In one passage of the book, some representations of the psychics about the blind are highlighted: In Luzes do arrebol

• Mr. Palácios: What happens is that people face blindness, usually in four very different ways:

• A large proportion of people view blindness as a real disability, causing major limitations for the blind person without, however, depersonalizing the person. That is, for this part of society, blindness limits the working power of the blind person. They feel no embarrassment in relating to blind people and believe that blind men and women can have excellent social participation despite the disability.

• But there are a percentage of people who see, who believe that blindness takes all labor power away from the human being, depersonalizes the individual, and makes him/her only worthy of pity and commiseration. They are not exactly a group of callous people, but a burden that society has a duty to bear.

• A third part of society understands that blindness gives blind people extra-sensory powers. In this case blind people seem to be deified and are assigned phrases such as, "God takes one thing and gives another," "blind people have a sixth sense," or other similar expressions.nbsp;

• There is a minority of society, however, that sees blindness as a kind of death or half death, and being close to a dead person is more or less aversive; for these people, blindness is reminiscent of tragedy, or even ill omen, so it is natural to move away. There are cases when people get such a shock from the situation that they are traumatized and even terrified to think about blindness¹². (Lima, 2001, p. 38)

Of course, there are far more representations of blind and people with low vision than these above mentioned, but one can get a general idea of ​​the discourses circulating in society. Waldin de Lima knew the speeches about blindness, since he was blind and acted for many years in movements for the rights of the visually impaired. In this excerpt and throughout the book, the author brings, in a romanticized format, many of his lifelong experiences.

For a long time, psychic representations remained almost alone in the social scene. By this we mean that the "perception" about people with visual disability came mostly from people who were not part of this group. Often the lenses used for such a representation were based on the mirror of normality.

It must also be made clear that many blind people or people with low vision are the focus of psychic discourses. In Waldin de Lima's own work, the blind character Ronaldo considers his condition worthy of pity, something that will cause him suffering forever and make him live in a world of darkness. More than that, visually disabled people can be seen as a danger to themselves and those around them, as we see in this excerpt from Lina Meruane:

But she wiped some elusive tears and re-measured her steps, memorizing: five big ones to the living room and eight short ones back to the bedroom, the kitchen on the left, ten to the bathroom on the left. The windows must be somewhere, and I ran into Ignacio. You are a danger; he said angry, refraining from shouting at me; stop running around in circles, you won’t break any bones. … Yes, I answered, slowly. Yes, but I am only a blind apprentice, with little ambition in the craft, and yes, blind and dangerous. But I won't sit in a chair and wait for it to pass. Ignacio would have preferred me to be quiet, but there is nothing to think about, I said, blindly snatching his cigarette and taking a forbidden drag.

(Meruane, 2015, p. 22)

The excerpt portrays the existence of certain conflicts in relations between the blind and sighted people. In this case, Ignacio is Lina’s husband, and she recently having become blind, is looking to find ways to live with her condition, depending on as little help as possible. This process leads to a series of difficulties, understood as Lina's inability or “dangers” to herself and others.

This relationship of dependence and perceived inferiority is often justified as a “concern” for the blind person's physical integrity. Like Lina, however, so many blind people do not “sit around” and are looking for new possibilities to find their autonomy and resist expectations of disability. In a way, this excerpt represents a great deal regarding the current claim for autonomy and independence, which faces a number of barriers and obstacles, many of them related to psychic attitudes.

People who live with visually disabled people – which is the case of one of the authors of this article - note that many of these people embody low expectations, stereotypes and clairvoyant stigmas. Therefore, we are not dichotomizing two groups, but pointing out crossings of perspectives on how we represent the world and how the norm prevails.

In some pieces of work analyzed, such as In All the Light We Can't See, Thunder Dog and “La Ceguera,” disability is represented not as the main component of a disabled person's life, but as one of several personal characteristics. In these texts, the blind person is not just a "huge unseeing eye," but someone with a host of other abilities that visual limitation does not erase. Success and failure are not in the condition of blindness, but in society's inability to contemplate the specifics of these people.

In his autobiographical narrative, Hingson describes the difficulties and strengths of his childhood blindness. Reporting his detachment at school, his career advancement and daily difficulties due to lack of accessibility and attitudinal barriers, the author tells how he escaped the collapse of the World Trade Center towers helped by his guide dog, called Square. Among many excerpts we could cite, we highlight the following:

I had a lifetime to develop the skills necessary to walk in a world that was not created for me. And if there's one thing I've really learned it is: vision is not all it’s cut out to be. Being blind is not an obstacle; It's something I've always lived with. The real obstacle arises from the prejudice people have about it¹³.

(Hingson, 2012, p. 108)

If there is a message about blindness that I would like to pass on to those who see, this is it: There is no problem with being blind. Blindness will not ruin your life or end all your joys. It will not destroy your creativity or diminish your intelligence. It will not prevent you from traveling and having experience elsewhere. It will not separate you from your friends and family. It will not prevent you from falling in love, getting married and starting a family. It will not stop you from having a job and making a living, blindness is not the end of the world. And with technology and education, blindness can no longer be exhausting and just another human limitation. And there are many human limitations. Life goes far beyond the workings of the eyes.

(Hingson, 2012, p. 147)

One of the aims of these narratives of blind and people with low vision is to affirm other ways of being and living in the world. That is, the intention is to make it clear that the complete or partial absence of vision does not compromise the capabilities of the individual.

Based on this, in the narratives analyzed, blindness is not the “end of the world”; more than that, it is represented as a possibility to experience new horizons according to the subjects’ life circumstances. There are countless cases of blind and people with low vision succeeding in their professions, such as Hingson, executive in a major financial firm, or Borges, a highly successful writer, or Marie-Laurie, character of All the Light We Can't see, a renowned scientist. Although they should be treated as exceptions due to the various forms of discrimination that exist in our society, these examples present future horizons for blind or people with low vision. Thus, the processes of representation and social participation are far beyond clashes with social positions or consolidation of identities.

This evaluative perception of blindness has much to do with claims, the conquest of certain rights and access to social opportunities once closed to this group. However, such a perception is not so recent, as we can see in an excerpt from Borges (2009, p. 157) of 1977:

Blindness is a gift. I have tired you with the gifts it has given me; it gave me English, it gave me Anglo-Saxon, it partially gave me Scandinavian, it gave me knowledge of medieval literature that I would have ignored, it gave me the fact that I wrote several books, good or bad, but that justify the moment that they were written. In addition, the blind feel surrounded by everyone’s affection. People always have good will for a blind person¹⁴.

More than demonstrating that blindness can have positive aspects, Borges considers it to be mainly responsible for several occasions that marked his life trajectory and his work as a writer. The word "gift" brings with it the idea that it is something brought - almost by divine command - by disability.

However, specifically in this case, reading Borges' full text, one realizes that the use of the word "gift" is characterized as the acquisition of a capacity that the author had not previously had, to see the world in other ways, in contrast to representations of blindness as darkness or something limiting. Acquiring other knowledge and experience provides other insights into life, demonstrating that visual disability is not the end of the road, but can be a new beginning.

In Anthony Doerr's novel All the Light We Can't See, the central character in the story is Marie-Laure, who goes blind at age six. The plot takes place in France starting at the beginning of World War II and coming to the present day. Despite the losses and difficulties experienced during the war, the protagonist, whether as a child, adolescent or woman, demonstrates autonomy and ability to resolve the conflicts that arise.

Marie-Laure is not portrayed as a heroine nor victim of society; blindness is one of many of its features, not being the center of conflict, which is uncommon in most of the pieces of work in which the main character is visually impaired. More than that, the character's blindness spends long stretches without even being mentioned directly, except for one or the other reference to the use of a white cane or Marie-Laure's keen hearing.

The experience of becoming blind at age 6, is reported in the novel, when the character hears many comments from neighbors, who show sympathy for her and her father, taking disability as a very serious problem, to the point of classifying her as part of a “curse”:

What is blindness? Where there should be a wall, hands find nothing. Where there should be nothing, a table leg scratches his/her shin; cars roar in the streets; murmurs of leaves across the sky; the whisper of blood in his/her ears. On the stairs in the kitchen even next to his/her bed, adult voices talk about despair.

"Poor child."

“Poor Monsieur LeBlanc.”

“He mustn’t have an easy life, you know? His father died in the war, his wife died in childbirth, and now this. ”

“It is as if they were cursed.”…

Despair does not last. Marie-Laure is too young, and her father is extremely patient. Curses, he assures her, do not exist. There is luck, perhaps, good or bad. Each day with a slight inclination to success or failure. But not curses¹⁵.

(Doerr, 2015, p. 35).

For Doerr (2015), the initial difficulties are obvious, but it is about adapting the individual to their disability and finding solutions and alternatives to the problems that arise. However, after this phase of transition and adaptation, daily life becomes less uncomfortable; after all, “there is no despair that lasts” (to paraphrase the excerpt above).

In the book analyzed, it is evident that disability is not disturbing or central to the character's life. Blindness is represented as an important mark, as a difficulty to be faced, but not as an evil.

At the end of the story, Marie-Laure completes her doctorate and becomes a renowned scientist in the study of mollusks and snails. She returns to Paris, marries twice, and has a daughter named Helene, who gives her a grandson with whom she walks on her free days, telling him stories of her past (Doerr, 2015, p. 523). It is, therefore, the narration of a life’s course in which there is no depreciation or overvaluation of disability.

Pieces of work that focus on visual disability cross different literary genres and styles and proliferate in adult and child literature, partly because disabilities have become an emerging theme in a society that claims to value diversity, and partly because publishers glimpse, in people with disabilities, a market with a potential to be exploited. Thus, there are conditions that have enabled the increase of literary products related to visual disability, which expands the representations disclosed by these means.

In this sense, many other books can be analyzed, and under other research biases, which means that the analysis proposed here neither concludes nor closes paths, but opens other paths to be followed. Many questions about the representation of visually impaired people remain open, and many questions can be questioned and analyzed.

Final considerations

The aim of this article was to analyze the representations brought forward by people with visual disability in fictional and autobiographical narratives. We did not aspire to conclude the matter, let alone analyze all the work in which these representations can be found. It is clear that it is through culture and language, thought about in this context of analysis, that the elaboration and circulation of meanings occur, and this is not a smooth process without tension or resistance. However, some representations still act more strongly in the scenario of struggle for meaning.

There is a predominance of conceptions related to the clinical issues of visual disability, such as the idea of ​​defective subjects who, due to their body limitations, are unable to fully perform most activities performed by people considered normal. In this conception, the focus is on the centrality of disability in the lives of the blind or people with low vision.

Many representations act as a kind of social hierarchy between the sighted and the blind, with the inferiority of the latter, as they are considered abnormal. Such ideas about visually impaired people have been referred to here as being “psychic”, a process that acts to maintain the hegemony of the psychic, considered “normal”, in power relations.

The representations related to difficulties, disabilities and inferiorities of visually impaired people put being psychic into practice. On the one hand, its effects are still intense on the blind and people with low vision - as representations about themselves and about it are still very much tied to the idea of ​​what is missing, not to potentialities and prominence. On the other hand, this is not a continuous process without resistance. Faced with increasing rights - such as job vacancies and higher education - and the participation of people with disabilities in society, many of these groups claim the right to be different, to have their own peculiarities and to foster these processes of identification.

Other representations became part of the social scenario, built by people with disabilities themselves from their narratives and other forms of manifestation about the specificities and differences of their condition. Such narratives value disability as a learning possibility, as a different way of seeing the world and even as a "gift".

More than that, these representations propose other ways of thinking about the visual disability, “presenting” to the psychics the point of view about the daily life and perceptions about the world of visually impaired people. Thus, these narratives deconstruct stereotypes and deconstruct the idea that not being able to see is linked to the incapacity of the subject and other situations that belittle them.

Such representations enlighten the look on the blind and people with low vision, as they educate the look of both the sighted and these people themselves. They teach "what the blind are like," "how to act with them," and show "what to do" and "how to proceed," creating a kind of curriculum to teach about disability and its implications.

By this, we do not mean that the representations constructed by the blind and people with low vision are correct or wrong, because the debate undertaken does not seek these types of solutions. However, it is interesting to question the different representations about this group. After all, there are many ways of being blind, far more than visions of disability and inferiority. It is possible to contemplate the peculiarities and provide opportunities for the blind or people with low vision who have skills, abilities and competences in the same way as other people.

Thus, much can still be researched regarding these processes of representation and the tensions they cause in the social scenario. The important thing is to tread new horizons and look at different points of view on this still poorly felt theme.

• 1
  Support: National Committee for Cientific and Technological Development - Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq).
  This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brasil (CAPES) - Finance Code 001
• 2
  References correction and bibliographic normalization services: Caique Zen (Tikinet) – revisã[e-mail]
• English version: Deirdre Giraldo - [e-mail]
• 4
  Translated from Portuguese.
• 5
  Translated from Portuguese.
• 6
  Translated from Portuguese.
• 7
  There is no English translation of this book.
• 8
  CAPES: It is a Brazilian Government portal. Known in Portuguese as: Portal de Periódicos da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (Capes),
• 9
  More information on the motto “nothing about us without us” (nada sobre nós sem nós) in http://www.bengalalegal.com/nada-sobre-nos. Access on: 18 September, 2019.
• 10
  Translated from Portuguese.
• 11
  Verbatim translation into English: Lights of the Afterglow not the official title.
• 12
  Translated from Portuguese.
• 13
  Translated from Portuguese.
• 14
  Translated from Portuguese
• 15
  Translated from Portuguese.

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Publication Dates

• Publication in this collection
  25 Nov 2019
• Date of issue
  2019

History

• Received
  23 Feb 2017
• Reviewed
  21 Oct 2017
• Accepted
  02 May 2018