“Almost Equal”: Confronting Norms and Normality in Experiencing Visual Disability

Introduction

Me: Do you remember, when you were little, when you first felt that you were different? As you were growing up, you didn’t know that some people could see. When did you start to realize this?

Milan: My grandma put this in my head when I was about eight years old. I guess I knew it by then, but she made this speech and she pitied me terribly. I didn’t know why. But somehow it got rooted in my mind, and then I acknowledged it. (Interview; November 8, 2014)

The universal human is seemingly a subject without attributes. However, to be labeled just “a human,” at least in the Western context, a person must fulfill many requirements—be autonomous, rational, healthy, heterosexual, white, and of a productive age (Hearn, 1992: 2). The techniques producing a normative human also create abnormality by identifying, defining, and recording every difference (Goodley et al., 2012; Southwell, 2012), which always reproduce normality. Such techniques had become widespread with the development of rational discourses during the 18th and mainly 19th centuries, with norms reinforced by the medico-legal apparatus (Foucault et al., 2003/1975). Obviously, differences among humans existed prior to this and were accentuated and ascribed meaning. However, after the formation of a discursive network producing ab/normalities according to clear criteria, normality could be pursued and related to, as well as defined against, subverted, and confronted.

Norms and normality have been in sociological focus since the origin of the discipline. In the study of disability—within sociology (Blaxter, 1976; Goffman, 1990a/1961, 1990b/1968; Hunt, 1966), as well within the new field of disability studies (Barton, 1996; Davis, 1997; Oliver, 1996)—it has represented one of the central topics, as the division between normal and abnormal serves to delineate able-bodied and disabled subjects. The topic has been extensively explored, addressed by numerous scholars from varied paradigmatic positions. Therefore, it may seem that another study on this topic may offer little that is new. However, the contours of normality in the analytical perspectives of these positions becomes blurred when confronted by the actual statements of people targeted by normative discourses. It becomes obvious that these perspectives need not exclude each other and are present in accounts of my communication partners, ¹ although they have little or even no knowledge about them.

In the following article, individual accounts are connected to the literature from disability and critical disability studies. The text moves from structuralist argumentation, on which the so-called social model is based, to the poststructuralist approach of critical disability studies (CDS). The social model, taking a structuralist perspective, focuses on the structures and conditions that produce one’s disability. Therefore, its goal is changing these structures and conditions, so they are more inclusive. This view, however, can easily erase each specific experience as well as the body. On the other hand, CDS, inspired by poststructuralism, concentrate on concrete practices and experiences, challenging and deconstructing the concepts producing disability, such as the body, subjectivity, in/dependence, or ab/normality. I discuss some of these concepts in the text while exposing how particular approaches relate to the accounts of my communication partners. I elaborate how the visually impaired people from my study encounter norms and relate to and confront them. The following article demonstrates that the abovementioned approaches to disability need not be mutually exclusive—it is possible to trace all of them in the narratives of my communication partners. They may serve to help comprehend diverse dimensions and processes, argue from different angles, and highlight various features. They show how norms are constructed and maintained, which forms they take and how they change.

My study draws on a qualitative research consisting of repeated nonstructured interviews and ethnographic observation from the years 2014–2017 with six visually disabled people (two males, four females), a boyfriend of one of those, and shorter interviews with social workers in a sheltered workshop for visually impaired people, ² all conducted in the Czech Republic, a postsocialist European country. The only criterion for my communication partners to be included in the research was their visual disability. Eva, 30 years old at that time, was recommended to me by a mutual friend. Over the course of time, her boyfriend Filip, who sees, joined some of the interviews and ethnographic observations. I met Jessie, also 30, at an exhibition about disability at which she had volunteered. Milan, 22, was one of the participants of a space orientation competition for people with visual impairment that I attended. During my volunteering in a sheltered workshop, I met Roman, 32, Vlasta, 45, Helena, 66, and the social workers. All of them lived or worked in the city of Brno and they are white, which vastly prevails as race/ethnicity in the Czech Republic. The interviews were recorded and repeated, and informed consent was obtained each time. All of them were informed about the purpose of the interviews and ethnographic observations and could refuse to answer any of my questions. I asked them to choose nicknames and further ensured anonymity. The data were collected for my doctoral dissertation and the argumentation discussing different models of disability within the findings has not been previously published.

Altogether, I gathered 1923 min (32 hours) of recorded material, which I transcribed, and 35 pages of field notes. For the analysis, I used software for the qualitative data analysis (Atlas.ti 7), which allowed me to gradually translate raw data into analytical material. During this chain of translations (including coding, reorganizing, creating a mental map, and writing comments and memos), some of the old qualities were lost (the amount of information), but new ones emerged (especially through coding). Coding was a pivotal tool for creating the basis for further transformations and connecting empirical data with sociological analysis. I used factual codes (family, white cane, or cooking), more abstract codes (trust, movement, knowledge, etc.), codes from sociological or disability studies literature (terminology, norms, in/dependence, etc.), and codes from Deleuzo-Guattarian philosophy (assemblage, arborescent, or molecular). I coded both the data and the literature so that they could communicate better with each other and make coherent and visible connections, pushing the analysis further.

The Social Model and Inclusive Norms

Highlighting a norm always encompasses its antithesis, the abnormal, which is confronted by it. Unless there is a clash with “Otherness,” it is not necessary to speak about a norm, to name its subjects or their attributes. This, however, is not the case with the people in my research. Each of them must relate to the norm in certain ways. Milan explains:

To be normal means to be a person without any problems, someone who fits certain norms, belongs to a collective, to a normal, regular world. As far as disability is concerned, it is a specific group that has something, and people either reject it or fear it, or there are some who are OK [with it] and treat them equally. (Interview; November 8, 2014)

The point of departure is represented by healthy people—those without any articulated attributes. A similar account is given by Eva, who speaks about the use of the word “disabled”:

Either I am disabled = afflicted by something [the Czech word postižený literally means “stricken” or “afflicted” by something], and I imagine it as if the disability was flying around and hit me in the head. . . Or, should I use the phrase “with disability,” it would mean dragging it with me. Either way, it is with me all the time and it doesn’t matter if I hold it by the hand dragging it, or if it has hit me and it is sitting on my head. (Email; December 8, 2016)

Even though disability is associated with deficiency, lack, and incompleteness (Goodley, 2011: 62), at the same time, it means “something more,” which is mentioned by Eva and also Milan. The term “people with disabilities” started to be used in an effort to put the person first, not the disability. Nevertheless, mainly within critical disability studies (which will be discussed later), the label “disabled people” has been advocated recently. Shildrick (2009) does not want to play down people and highlight disability but to show their mutual interconnectedness in the discourse grounding able bodies.

Milan implicitly stresses the hierarchization of abnormality, in which “normal, healthy” people become gatekeepers who decide whether they would consider a person with disability equal. To integrate, fit in, and gain entry ticket into the “normal world” is the goal that many people with disabilities strive to attain. Integration and obtaining the status of a valuable subject are the top achievements outlined in the social model that was based on the Fundamental Principles of Disability document first published in the mid-1970s in the UK (Oliver, 2013: 1), where it still represents the dominant activist approach to disability and a foundation for disability studies. It adheres to the humanist perspective of the Enlightenment and its related conceptions of human rights and social inclusion, in which autonomous subjects are able to reach their goals (Bayliss, 2009: 281).

The social model proclaims a departure from the individualized medical model, which refers mainly to bodily limits (impairment) and medical interventions; it had been the most salient approach to disability among both medical institutions and the public, before the social model disrupted its dominance. Unlike the medical model, it stresses on structural conditions accentuated in the concept of disability, ³ centered around the social factors, institutions, and barriers (co)creating the disability (Bayliss, 2009; Goodley, 2011; Shakespeare, 2014). The deflection from biological determinism and essentialism to the social construction of disability opens an immense new space for intervention and poses disability as a social, not a personal, problem concerning not only individuals with impairment but everyone. The social model sees the discourse of disablism as a discriminatory factor creating and strengthening inequality, basically working in a way similar to other stratification factors. It pursues a social-political approach, which aims to overcome oppression and leads to emancipation. Because the social model criticizes social exclusion, which is accompanied by the denial of the status of normalcy to people with disabilities, its goal is to broaden the norm so that it is more inclusive.

Gradually, disability was redefined, and a shift from “pathology to politics” emerged (Goodley, 2011 cited in Goodley et al., 2012: 311). The social model encompassed personal experience, this time not related to the story of an impaired body but to prejudices, barriers, and discriminatory practices that people with disabilities had to face on a daily basis (Shakespeare, 2014: 11–17). Instead of shame over bodily imperfections, anger aimed at society came to the fore: the society structuring their possibilities should change, not the people with disabilities. The anger coalesced into emancipatory efforts that aspired to achieve social, environmental, legal, and political transformation (Riddle, 2013).

In the last two decades, the social model has been challenged from diverse paradigmatic positions. One such position points to the problem of its dissemination into other geographical areas, related to its British roots among educated middle classes and its incapacity to respond to a specific environment. In this view, the social model represents a Western ideology imported into the context of the Global South (Mallett and Runswick-Cole, 2015: 19).

In postsocialist countries, the social model is not widespread. Moreover, Central European states, like the Czech Republic, often fall out of the focus of Western social theory or disability studies as well as postcolonial studies. These countries are characterized by geographic uncertainty or even invisibility, not being Western enough, but neither Eastern enough. Their cultural and historical specifics are thus often overlooked.

The Czech Republic: Disability as Personal Responsibility

In postsocialist countries, as Mladenov noted as late as 2015, the topic of disability has met with little attention. Yet interest in it has been growing (e.g. Holland, 2003, 2008; Mladenov, 2009, 2018; Mussida and Sciulli, 2016; Tobis, 2000), even if research is often conducted by scholars based at British or U.S. universities. Disability studies are not an established discipline; however, in recent years, they have inspired debates within social sciences and humanities (e.g., Kolářová, 2014; Kolářová and Wiedlack, 2016; Procházková and Vaďurová, 2019; Synek, 2018), with some publications available in Czech (Osman and Pospíšilová, 2016; Porkertová, 2019; Synek et al., 2019).

As stated above, the social model of disability has been problematic in application of its ideas to other geopolitical contexts, not least due to its specific historical development as a combination of bottom-up activism linked to academia. For example, the Czech public discourse lacks the social model argumentation almost completely. Although the model has started to penetrate expert and academic discourse, the public media space is still dominated by charity, street collections, and “super-crip” stories (more in Silva and Howe, 2012), which represent individual “personal” struggles with “fate’s adversities,” where everyone must/can fight their own fate and failure is also personalized. The individualized stories, typical for the medical model, can, of course, be admirable and the collections beneficial; however, the problem lies in the absence of a broader public discussion about the material, structural, institutional, social, and economic dimensions creating disability. The same concerns normality, which remains a question of personal responsibility. Some people from my research have thus accepted the task to fit into “normal” society as their own. As Vlasta puts it, “So, one tries to measure up to healthy people. Because you have no other way than to try to be their equal” (interview; October 13, 2014). An individualized effort to make “his environment treat him like a healthy person” is mentioned also by Roman (interview; October 14, 2014). Both indicate that the burden of “measuring up” lies with them. Reaching that point, however, is never permanent and it requires constant work, energy, and proof:

Roman: That is because I always try to hit on healthy girls. If I just didn’t give a shit and hit on a girl who is a crip like me, then maybe all would be OK. I wouldn’t have to constantly prove things; I wouldn’t have to do anything. . . (Interview; October 14, 2014)

Roman’s abilities are permanently at stake. Campbell (2009) talks about creating ability stories, in which failures and illnesses are simply episodes on the way toward physical fitness. However, this does not apply to people with disabilities; their situation is the opposite—the point of departure is disability that requires permanent revision.

Even though the situation of people with disabilities in the Czech Republic has changed considerably in the last 30 years, a deeper reflection on structural conditions is still missing.

Milan: Taking into account what I heard about the Communist era. . . that people like me were sent to institutions, then I think it has improved. We are considered almost equal, like having equal rights, being equal to others. And I think it has been improving every year. One day. . . I don’t want to say that everyone will be able to see, but there will be no barriers. Just considering what science and medicine can do, what kind of aids that did not exist before, I guess life is much better than it used to be. I do not claim this based on my experience, because I did not live then, but from what I hear from older colleagues or find in literature, I think we definitely have no reason to complain. (Interview; November 8, 2014)

As in the medical model, Milan sees the path toward equality through health and social care, science, and the various aids that the social model has ceased to consider the focal point for improving the quality of life for people with disabilities. Thus, he stays within the medical, individualized model, instead of aiming at a deeper societal transformation. Together with the low expectations inherited from the former regime, in this view, the phrase “almost equal” relates to “we definitely have no reason to complain.” In general, civil society and social movements in Eastern Europe are characterized by the imported (however important) foreign agenda that came after the year 1989 as a reaction to seemingly missing social movements in the countries of the Soviet bloc. Already existing organizations were disregarded and a system of funding dependent on foreign grants appeared, which caused professionalization of NGOs capable to obtain such funding. This, according to the biggest critics, “prevented East Europeans from creating indigenous social movements; instead, they imposed on them a particular organizational pattern that was inimical to the idea of popular movements.” (Císař, 2020: 240). The difficult transfer of foreign (mostly Western) models and agenda (and their understanding) into other geopolitical contexts was symptomatic of the whole civil society. The rise of the social model depended on activities from the bottom, from people with disabilities, who wanted to change their lives. This, however, did not happen in Eastern Europe. Unlike in other countries where the social model has brought activism, emancipation, and an effort at significant changes, in the Czech Republic, the discourse of adaptation still prevails, along with a level of satisfaction regarding the gradually improving conditions.

In my research, Milan was the only one who had frequented various institutions specializing in children with visual (and other) disabilities. Mostly boarding schools, they connected education with the disciplining of individuals, so that they would fit well within the majority society and adapt to its norms. Milan compared the conservatoire, specialized in working with visually impaired students, with his current studies of the transverse flute at a music academy:

Milan: What is surprising is that here, I find a more supporting attitude than at my previous school. The professors there used to say that no one would adjust to us later on. This [music academy] is something totally different; they do not have all that equipment, but they do the maximum. You can see the effort. They constantly ask you whether you need something. Whatever you say, they try to do it as quickly as possible; they try to address the problems. (Interview; November 11, 2014)

The specialized school had put pressure on its students to adapt, which was also applied to the school premises—they were seen as already conforming to visually impaired students, and there was ostensibly no need to negotiate or alter anything. This unwillingness to make changes might be also seen as preparation for the “world outside,” understood as rigid and not willing to conform to the needs of people with disabilities.

Critical Disability Studies: Reconfiguring the Binaries

However, the strategies of dealing with the concept of “normality” do not necessarily rely on adaptation and trying not to stand out. This is most obvious with Roman. His metalhead image clashes with the notion of a visually impaired person, which is also connected with the use of language.

Roman (about the word “crip”): So, they make obvious through this that they do not pity themselves, yeah. It sorts of takes the strain off the situation. Instead of saying, “I am a poor disabled person,” you say, “I’m a crip.’ So what?” A person who is kind of normal. (Interviews; October 14 and 30, 2014)

Roman clearly sees the word disability in opposition to normality, and it is obvious he refuses to use the term in relation to himself. The so-called crip movement (see McRuer, 2006) uses the term as a tool of collective pride, much like Roman seeks to redefine the originally pejorative word. He uses it as a way to disentangle himself from the asymmetric relationship normal/disabled, to reject the patronizing attitude, and to escape the potential sensitivity of the issue—demonstrating that expressions like “crip” cannot hurt him. He wants to redefine “his state” and have greater control over its construction so that it is not so rooted in the discourse of disability.

To redefine not only disability, but also the very notion of normality, is the aim of CDS. As its name suggests, this approach is based in critical theory departing from the Frankfurt School, and it critically reflects upon the direction of disability studies and the humanist social model. CDS appeared at the beginning of the 21st century and started reevaluating the existing paradigms framing disability and assessing the possible political, economic, and social change (Meekosha and Shuttleworth, 2009). According to Goodley (2013: 632), the question is whether the ideas of prior disability studies are relevant in the contemporary postmodern world of late capitalism. The social model does not respond to ongoing debates about the ethics of social care, the political and theoretical signification of embodiment, the continuous reformulation of the nature of disability, and the context of complex identity politics, which have shifted from unification to diversification. Still, the social model remains important for conceiving disabling conditions and the construction of disability as such (Meekosha and Shuttleworth, 2009: 61). CDS want to redefine it, following poststructuralist trends focusing on the deconstruction of dualities such as abled/disabled, healthy/impaired, or normal/abnormal. At the same time, CDS reflect national and regional diversity and do not propose a universalist notion of disability.

Disability studies established around the social model draw on the Enlightenment and modernist ideal, which exhibited the problem of not being accessible to all. Changes in material, economic, and social structures would supposedly mitigate inequality and enable disabled subjects to use their potential fully (Bayliss, 2009). In contrast, CDS critically revises “the pathologies of modernity” (Barron, 2000 cited in Shildrick, 2009: 106), which lie in the separation of material, disciplinary, categorical, and ethical boundaries (Shildrick, 2009).

CDS aim at a critique and subsequent transformation of those entrenched and scarcely acknowledged obstacles to fundamental change (Shildrick, 2012: 35). The path to this transformation must lead through disrupting the boundaries between nondisabled/disabled or normal/abnormal, and bring to the fore analyses of how these boundaries are constructed and maintained. CDS draw on transdisciplinary grounding and focus on the question: “What makes disability so threatening for the normative majority?” (Shildrick, 2012: 35). The stubborn maintenance of dichotomies such as “able bodied/disabled or healthy/impaired” as well as others (man/woman, hetero/homo. . .), is, according to Shildrick (2012), upheld not by their inherent difference, but by their closeness, and a very fuzzy and subtle boundary. This causes “anxiety. . . because [disability] speaks not to some absolute difference between the experience of disabled and non-disabled forms of embodiment, but rather to a deeply disconcerting insinuation of commonality” (Shildrick, 2012: 34–35).

A similar argument is invoked by Campbell (2009) when she points out “the desire to create order from an assumed disorder; a flimsy but often convincing attempt to shore up the so-called optimal ontologies” (Campbell, 2009: 197, italics in original). Campbell sees the body as inherently changing but nevertheless set into a fixed order of the notion about its stability and unity. Disability disrupts this order and other fragile boundaries and concepts, which are woven around the autonomous independent subject—wellness, ableness, perfection, competency, causation, productivity, and use value (Campbell, 2009). Accepting all bodies as vulnerable and unstable opens space for cancelling the dominant norm and all its “deficits” (Shildrick, 2012) and for a radical reconfiguration of its ontological and epistemological grounds (Shildrick, 2009).

Disability is built on a negative difference distinguishing normality and abnormality. CDS want to deconstruct this division and highlight the difference in an affirmative way, sometimes following Deleuze (e.g. Goodley et al., 2012; Overboe, 2008). The conception of “Otherness” as something weird is referred to by Jessie when she says: “the fact that something is different doesn’t mean it is bad” (interview; December 15, 2014). Diversity should not be approached from the position of dominance (Shildrick, 2009, 2012). The dominant perspective can often (deliberately or not) overlook the needs and experiences of disabled people; the thinking of academics who are proponents of the Deleuzian legacy of affirmation, such as Shildrick (2009, 2012) or (Braidotti, 2013), detaches from anthropocentric and ableist positions and calls for humility and responsibility for our actions in the world in which we participate, rather than rule.

Assemblages: Intelligibility, Confusion, and Shaking the Norm

Through the Deleuzo-Guattarian logic, disability and norms can be conceived as assemblages, in which heterogeneous elements are being mutually dis/connected and altered (Deleuze and Guattari, 2005). This process allows us to conceptualize the heterogeneous nature of disability, its dynamics as well as its stability. An assemblage can be considered a temporary configuration that enables one to do something, while disabling something else. The same logic applies to disability—in an analysis, it is crucial to focus on the processes of establishing specific assemblages, which enable and disable one to do something by making further connections and conjunctions. These connections are dynamic, and thus an assemblage is inherently unstable, yet it attains concrete contours at some moments. These contours are acquired through a process called territorialization, which stabilizes an assemblage by periodic repetition and in which “milieu components (. . .) cease to be functional to become expressive” (Deleuze and Guattari, 2005: 315). A white cane or a guide dog can attain an expressiveness in the assemblage of disability, formed into a sign that makes it easier to recognize a visually impaired person. However, it is not only these attributes, typical for visual impairment, that can be expressive; a disability can be also signified by a more general characteristic, such as clothing. Milan laments: “I used to have terrible problems with my boyfriend. . . he would tell me that I dress typically blind. . .” (interview; October 19, 2014).

No store has a section for visually impaired people, yet clothing can be recoded as such. The code provides a transduction between heterogeneous registers and milieus of assemblages: “Transcoding or transduction is the manner in which one milieu serves as a basis for another, or conversely is established atop another milieu, dissipates in it or is constituted in it” (Deleuze and Guattari, 2005: 313). Living things, according to Deleuze and Guattari, “continually pass from one milieu to another,” as well as “milieus pass into one another” (Deleuze and Guattari, 2005). Consequently, “they are essentially communicating” (Deleuze and Guattari, 2005). Different registers of milieus must be transcoded/translated so that milieus can communicate and intertwine. In Milan’s case, we can consider looks, clothing, and disability as interwoven milieus. Certain clothing (that can correspond to a stereotypical image of a visually impaired person) is recoded as “typically blind,” connecting a certain look (expressed by clothing) with disability. It is subsequently used to define a “disabled person” and give contours to the assemblage of disability, which becomes comprehensible. Because Roman is aware of this association, he uses his look to escape stereotypical perceptions.

Roman: When I could see, I looked completely normal, like every working person, but when I went blind, girls would let me sit on a tram and I felt like an absolute. . . crip, so to say. I could not get used to it, so I made my image not to look so disabled. Simply, I didn’t want to feel like an invalid, whom everyone pities, and so I had my ears pierced for the first two earrings, and then two more, and so it went on. . . Well, I used to wear long hear before, but I had the piercing and earrings done only after I went blind. I needed to step out of the line; I simply needed some radical change. After I lost my sight, I had to make myself visible and somehow different. (Interview; October 13, 2014)

Roman’s strategy is not to “mask” the disability but to make himself visible in ways usually not associated with disability, which cannot be easily recoded to it. As a stereotype, disability is not only linked to incapacity, incompetence, and pity but also to passivity, docility, and decency (Rieser and Mason, 1990: 98–104). None of these correspond to Roman’s tough metalhead image. His attitude shows the dual nature of integration vs. Otherness, knowing that he cannot fully integrate into “normal” society, Roman decides to underscore his Otherness and define himself against normality as such.

Roman’s effort not to look disabled was successful; however, when he transferred (in Deleuzo-Guattarian terms, deterritorialized) his look from an environment in which it could be coded as disabled into an environment of metal fans, the whole disability assemblage shattered, or rather was not assembled—because there was not a code that would facilitate translation between disparate elements.

Roman: When I visit a [metal] gig, I look like everybody else. So, some people are surprised—for example, when buying beer at a bar—that I have a cane, and they say that I have it so that I do not have to wait in line and similar bullshit. And then, when they find out it is genuine, they start to apologize a lot. (Interview; October 14, 2014)

In this way, Roman distances himself from the normative notion of a visually impaired person by creating unintelligibility and confusion. Norms serve mainly as guarantors of linear evolution, which is possible to understand, anticipate, and control—via a logic that Deleuze and Guattari (2005/1987) call arborescent. According to them, tree logic has governed Western thought and grounded its structure and organization in binary branching, creating oppositions and delineating clearly defined identities. At the same time, this evolutionary system is a tool of defining itself against otherness. The need or organization and comprehensibility applies to both sides of the binary—the dictate of normality not only sets the boundary between ab/normal, but abnormality must have clear contours as well. Arborescent lines, including the construction of a norm, give us a clue on how to relate to other subjects. They suggest what to expect, what is suitable or not, and what should be done to control a social situation (see Goffman, 1990c/1959). People have the need to make an unintelligible situation understandable, to place it in the normal order of things (see Garfinkel, 1967). In Roman’s surroundings, the (somewhat absurd) idea that someone takes a white cane so that they do not have to queue in line for beer is more acceptable than a visually impaired metalhead. Arborescent thinking cannot do without understanding causality. However, the inability to trace a causal structure does not imply reevaluation of default standpoints. Instead, it leads to pretended understanding (Deleuze and Guattari, 2005: 283), namely, the interpretation of the cane as a deception.

Roman further adds: “Blind people are different; we also each have our own personality. And many people can’t see this” (interview; October 14, 2014). The term “normality,” related to the majority society, highlights the dual nature of unity and diversity—on the one hand, subjects are disciplined and homogenized, and on the other hand, there is a certain space for diversity. For so-called healthy people, it works within quite broad limits—they can dress differently, like different musical styles, have diverse hobbies and temperaments. The limits for people with disabilities are much narrower and homogeneity is expected. Conceiving disability as assemblage contains the inherent possibility of changing these limits (even if it is not easy), as it is not assembled (territorialized) for good. Roman’s example shows the dynamic nature of assemblage because it refers to the interconnectedness of heterogeneous elements that alter in mutual interaction. The action that puts the assemblage of disability together is finding out that Roman really could not see. Thus, disability could be recognized and heterogenous elements could be put together; Roman’s metal look, visiting a metal gig, and his white cane—metalhead and a blind person. Accepting the same code, translating it to disability, at the same time implies its transformation—a metalhead is no longer someone who cannot be visually impaired and vice versa. A visually impaired person can be a fan of metal music.

Apart from misunderstandings, aggressive reactions are frequent, in which the primary purpose is apparently to attack a person for creating confusion and not conforming to the normative notion of a passive and meek visually impaired person. Roman defies the molar identity of a visually impaired person, which has clearly defined contours. Molar lines (belonging to arborescent thought) are lines “of rigid segmentarity on which everything seems calculable and foreseen, the beginning and end of a segment, the passage from one segment to another” (Deleuze and Guattari, 2005: 220). Deleuze and Guattari discuss segmentarity as something that gives us feelings of certainty and safety. We desire “(o)ur security, the great molar organization that sustains us, the arborescences we cling to, the binary machines that give us a well-defined status, the resonances we enter into” (Deleuze and Guattari, 2005: 256). This molar safety is disturbed by Roman’s look and behavior, and the people around him remind him about his place and sanction him for not adhering to the requirements.

Roman: Sometimes people think I am simulating. My eyes still move—I’m not totally blind, I have some five percent of my sight left, which makes me a bit untrustworthy to strangers. I’m walking in a subway and hear them shouting, “He can see!” and such bullshit. But I’m getting used to that. In the past, I would stop and almost get into a fight. But now I just ignore them. These people are such assholes. They shout at me, or they try scams like, “Hey, you lost your wallet,” expecting me to look around. Or they wave their hands in front of my eyes. I walk with confidence, I walk fast. In the past, I used to walk without glasses, but now I wear sunglasses even at night, so that everybody sees I am blind and just lets me be. (Interview; October 14, 2014)

In Roman’s experience, molar lines meet molecular lines, which defy binary organizations: being dispersed, flowing and escaping the territory, they are unpredictable and uncontrollable. While molecular lines permeate molar wholes, molar lines try to capture molecular flows (Deleuze and Guattari, 2005). As extraordinary and transgressing one normative framework, disability disturbs other frameworks as well. Shildrick (2009) or Goodley et al. (2014) see disability as space that opens up new ways of becoming, escaping normative organization. Roman’s narrative shows the relative separation of the body and the discourse of disability or visual impairment but also their connectedness. “Not looking disabled” does not have to exclude “not looking blind.” Similarly, Eva defines herself against the broad concept of disability, but in many situations, she considers it important that people know she cannot see, because only then they can be attentive. Nevertheless, disability and visual impairment are interconnected, and if one is not recognized, the other is at stake as well.

On the one hand, there are clashes between stereotypical notions and someone’s look, but on the other hand, there are situations in which no clash occurs, because nothing “gives a clue” that the given person cannot see. There is a deep-rooted idea that a visually impaired individual is easy to recognize, but often they are not. I had met Jessie only once before our interviews, at an exhibition. Therefore, I did not remember her well, yet I thought I would have no trouble recognizing her—I expected “the usual accessory”—a cane or a guide dog. Jessie had none of these. I looked around and waited longer, thinking she might be late. The whole time Jessie had been standing in front of the restaurant where we were supposed to meet. It often happens to her that people do not recognize she cannot see, even if sometimes it is surprising for her.

Jessie: I was stunned when a friend told me that she could not tell. Sometimes, people were quite surprised when they found out. Some of my colleagues said that it is obvious with some people, because they have deformed eyes, but my eyes look normal. I have a good sense of orientation, I can maintain direction, and the coordinator at the exhibition said to me, one could not tell you have any problem. (Interview; November 1, 2014)

The “grey zone,” in which a person does not look “impaired enough” causes many misunderstandings (Fourie, 2007). The behavior of a visually impaired person, who is not recognized as such, since the assemblage of disability (which would provide a different meaning) is not recognized, can often be regarded as unfit or even impolite (Southwell, 2012). Roman tells how he started losing friends:

Roman: Definitely, it is better to be blind than sand-blind. When I used to walk without a cane, it sucked, because people thought I did not want to talk to them. They waved at me, and I would just pass, looking plastered or stoned, which I often was in those days, after all, and did not greet them back. (Interview; November 30, 2014)

Helena and Eva mention the expressive, not only functional, importance of walking with a cane. The cane prevents conflicts and situations that can be potentially dangerous. They say that even for people who can see a bit, it is important to signal that they cannot “see well.” A shorter signal cane can be used, which has mainly expressive function and covers the space in front of a person. Helena and Eva regard carrying a cane to be the personal responsibility of a visually impaired person.

Jessie can see a bit (she sees blurred streaks) and she uses the cane only in unknown environments; when in the city of Brno, she does not use it and she walks by heart. She problematizes the cane, setting it into wider social relationships, conduct, and expectations:

It’s true that I felt a bit like an idiot when I was in the hospital and was searching for the stairs, and people were mean to me. The stairs were just next to me. If I had the cane, maybe they wouldn’t say, “What are you asking?!” In a full tram, I do not ask anybody to let me sit. I fold the cane, and no one can see I have one. I stand by the door and again, there are reactions; some people grumble that I obstruct the door instead of asking why I stand there. If they said, “You are standing in my way,” it would have been better. People immediately jump to conclusions instead of asking why things are a certain way. (Interview; November 1, 2014)

Jessie detaches the cane from purely personal responsibility, saying that many situations could be handled in a different way, without people seeing her as visually impaired. She refers to the importance of connections to broader social relationships. She points out general problems in communication, unwillingness to ask in a nonstandard situation, and leaps to fast conclusions. Deleuze and Guattari would talk about the need to organize everything into molar shortcuts, as the boundaries of a norm do.

Disciplining Subjects within the Limits of Visual Norms

Subjects and bodies labeled as disabled are constantly referred to the normative requirements of able-bodied subjects. However, this does not mean that full adaptation and integration is expected. Normality and abnormality must be easily legible—it should be obvious where the boundary is, who belongs where. As Roman’s case demonstrates, confusion causes indignation and aggression. The principle of arborescent branching and the related molar identities lies in their binarity, i.e. either/or and nothing in between. Creation of opposites is rooted in so-called negative difference based on identity, opposition, analogy, and similarity that represent and mediate it (Deleuze, 2004/1968: 38). According to Deleuze, difference is tamed and ushered into molar safety, which has a dividing function and leads to molar identities, such as healthy/disabled or animal/human: “Difference must leave its cave and cease to be a monster” (Deleuze, 2004). CDS propose an affirmative approach to difference, which makes it possible to perceive difference without the need to set it in binary oppositions.

As discussed above, visual disability must be expressed within certain limits. It is not only necessary to clearly indicate which category one belongs to, but also one’s attributes should not be disturbing. Shildrick (2009: 19) claims that the body in Western thought is relatively unimportant as long as it fits within a normative framework. In case it is dysfunctional in some way, it attracts unwanted attention and is devalued. Deleuze and Guattari (2005) see the body as assemblage in which parts are not subjugated by the whole but are in a state of permanent exchange, comparing it with a conception of the body as a unity not to be disturbed. My research shows that a cane or a guide dog—something external that fits in the discourse of “lack,” that is, expresses the compensation of a deficit—are considered less controversial and disturbing than when the body itself is nonconforming. Milan is confronted with this:

Well, many people would notice my way of dancing. Robin [Milan’s ex-boyfriend] used to go to parties and he could dance, and so, when we were at a party in a bar or somewhere, [but] I would often hear, “Jesus, he dances in a weird way.” (Interview; October 19, 2014)

Not to stand out means not to cause uneasiness (Shildrick, 2009) that arises out of the contrast between molar safety, which secures and controls continuity and is related to able-bodied subjects, and molecular lines, which escape molar segmentarity and cannot be grasped or controlled. They are disconcerting (Deleuze and Guattari, 2010). It is visible that Milan cannot see. During the interview, he does not look me in the eye, does not gesture; his moves are different from a seeing person or from a person who used to see. His visual disability does not consist of his external attributes; it permeates his whole body, creates an assemblage with it, changes it. Similarly, sight changes the body of a seeing person. The conception of body as assemblage does not lie in the contrast between the whole and the parts but in the constant exchange between various bodily elements, including external ones. Milan’s blindness is also projected into how he moves and what connections he creates with his body. Milan does not know how other people dance, what the standard is, what looks “weird,” and what does not. The behavior and conduct of visually impaired people are conditioned from childhood so that they adapt to the norm and do not disturb. As Milan describes:

I would do what most visually impaired people do, until they are not re-educated by their parents or some center. Well, they have these autistic inclinations. I will show you [Milan sways back and forth]. I have a friend who moves his arms like this, makes all these sounds, and I guess I used to be like that. That’s why many people avoided me, when I was little. (Interview; October 19, 2014)

Milan’s case clearly refers to the disciplining of the body (Foucault, 1977, 1978), which must conform to the norm. Foucault mainly focuses on the utility of bodies, which have come under state administration and/or under capitalist society. Thanks to Deleuze and Guattari, it is possible to add a level of un/certainty and disturbance, which does not necessarily result from utility, and in the abovementioned account, it is related to a visual norm. “Weird” dancing is related only to the view of others, along with Milan’s look and the “autistic movements” that a visually impaired person learns to eliminate.

Milan: I did not want to wear the glasses, but my parents tried to justify it by saying that I had ugly eyes. That one of my eyes is terribly murky, and people looked at me as some poor soul. That my eyes were sunken, and I did not look good. The glasses would fall off my nose, hurt me, and I often got nervous at the conservatoire because of the falling glasses. In my opinion, it matters what a person is like inside; the look does not matter. But the parents said that the look would always matter, and the first impression is important. And I said to myself, maybe this is how you see it, but in my mind, I thought what a monster I was. (Interview; October 19, 2014)

For Milan, the dark glasses were mainly a way to hide his “disturbing” eyes from others, to fit the visual norm; he had no other practical use for them. Since childhood, the family and the special school he attended would pressure Milan to adapt to his environment and send negative signals individualizing his visual impairment and making it his personal responsibility. The social model provides a tool that aims at questioning the norms formulated by a society. Milan, instead, questions himself. The individualized medical model is built on rationalization and legitimation of the exclusion of disabled people from certain activities and communities based on bodily or sensory deficit, which sometimes in reality and sometimes presumably makes the performance of some activities difficult or impossible. A social worker I interviewed explains how this relation to embodiment is often apparent.

Renata: He [one of the workshop employees] cannot find a job, because his disability is obvious. That’s why he stays in the workshop.

Me: What does a person with an obvious disability look like?

Renata: It’s the eyes. Their shape is different; they are deformed—even if they may function better than Roman’s eyes, which look healthy. We had a colleague here and it was not obvious in her case either. She cannot see well, but she is nice, friendly, everybody loves her, and so she can find a job much more easily than people who are obviously disabled. (Interview; October 13, 2014)

The imperative of fitness/ability (Gouvier et al., 2003) is not the only means of exclusion in employment, and according to Renata, it is not the main one. What is crucial is to look “normal,” that is, not to disturb. Mladenov (2015) discusses the transition from state socialism to postsocialist capitalism in Central and Eastern Europe. Both regimes are characterized by productivism, in which the purpose is to create bodies that serve only instrumental reasons. Disabled bodies that do not meet standards of production are thus not considered to be socially valued and are often materially marginalized. According to Mladenov (2015: 7), “[T]he state socialist administration rendered disability exclusively in terms of inability or decreased ability to work (. . .) [Medical bodies were] reduced to privation of capacity to perform wage labor in mainstream settings due to medically determinable‚ deficiencies.” However, as my research shows, function and utility are not the only factors that construct disability on the labor market. The social worker Renata said that “to look normal” was more important for getting a job than the actual ability to “see.” Therefore, it is necessary to include the dimensions of normality and disturbance in the analysis of disability and not remain only at a materialistic/Marxist level.

Thus, the issue of look has many contradictory aspects, each with potential risks. In case the look does not correspond to the stereotypical image of a visually impaired person, trust in disability is at stake and a person can face bullying. In case it is not obvious that a person cannot see, they may risk endangerment, for example, by people driving in cars, or experience misunderstandings and insults in their personal contact with others. And, on the contrary, if the look and behavior of a person corresponds to the notion of visual disability, it is too much—and others tend to discipline or exclude the person, for example, from employment. A visually impaired person, who looks nice, who is not seen as visually impaired at the first glance, but who also has the external attributes, such as a cane or a guide dog, which signal who the person is and to which category (abled vs. disabled) the person belongs will have the easiest time to “pass.”

Conclusions

In disability studies, norms represent one of the central topics, which can be viewed from many angles. In this text, I have confronted the medical model, the social model, and critical disability studies approaches with the experiences of my research communication partners. It becomes clear that everyday relations to norms involve a mixture of various approaches, which confront and influence each other. Although these models are not explicitly articulated by (or even known to) my communication partners, using them as analytical tools facilitates the exposure of not only normative (e.g. following the prevailing medical model), but also subversive processes, and helps reveal the mechanisms that operate within the construction(s) of disability.

The accounts of my communication partners often present the medical model, which burdens an individual with personal responsibility to conform to the norm, and impairment is viewed as an obstacle to this process. This model follows the logic of a deficit that must be supplemented via various medical interventions, technologies, and aids. From the perspective of the medical model, the norm as such is relatively static, functioning as a goal, and able-bodied “normal” people work as gatekeepers who can accept another person as equal to them. This is the most widespread approach to disability in the Czech Republic, including its specialized institutions.

The norm, seen as a goal, is present also in the social model, and conforming to it and belonging among “normal people” is also important for my communication partners. In contrast to the positivist medical approach, the socially constructed nature of norms and normality offers space for dynamics and transformation of the norm and its boundaries, so that people with disability can fit in and thus crown the humanist perspective of the human subject’s ability to reach goals framed by conceptions of human rights and social inclusion. People in my research see norms and their boundaries as problematic and share their experience with discrimination and inequality; however, due to the lack of broader knowledge about the social model and the underdeveloped disability movement in the Czech Republic, any efforts at “normality” remain primarily at the individual level.

Critical disability studies show that it is not enough to broaden the boundaries of the norm. The critique is aimed at the very differentiation between normality and abnormality and at the other related binaries upon which disability is built. From the humanist perspective in the social model, CDS move to a posthumanist view, which eschews the notion of an autonomous, independent subject, focusing on interconnectivity and changeability, including the human as well as the nonhuman, the organic and the inorganic, which all create subjectivity and the body. Instead of the “capability and usability of the body,” CDS examine embodiment, question bodily boundaries and how they are maintained, and ask about the meaning of “ability and disability.”

Unlike the social model, which spreads from the top, CDS notice molecular, dispersed lines, which are also present in the everyday lives of my communication partners. Although Roman adopts the individualized effort to make “his environment treat him like a healthy person,” which is usually associated with the medical model, his praxis of visual disability often confronts the very notion of the norm. As Deleuze and Guattari state, rigid segmentarity and molecular lines often come together, so the medical model and CDS approach can be traced in one person’s account.

Un/certainty and disturbance, which Roman often generates, frequently induce indignation or even aggression caused by the inherent closeness of healthy and disabled bodies/subjects. Looking at the accounts of my communication partners from this perspective, it is possible to observe how maintaining boundaries and differentiating who belongs where creates the biggest pressure. The norm serves as a guarantor of predictability, controllability, and transparency, affecting both healthy and disabled subjects and clearly defining the boundary between health and disability. People with disabilities and their bodies often escape normative organization, creating confusion and concern. Critical disability studies and Deleuzo-Guattarian approaches enable to reflect affirmative conceptions of difference and conceive subjects and bodies as inherently changing, unpredictable, and uncontrollable, with only temporary boundaries.

Although the Czech context may be specific due its postsocialist legacy, disability in general—and people with disabilities—elicit both conformist and contested actions. People and their environment must be in concord, so their decisions and activities may seem autonomous, unproblematic, normal. This ease becomes complicated, though, when the environment meets Otherness—which means nothing other than not being smoothly connected to assemblages that enable one to do something. These ruptures between certain bodies and the discursive-material world provoke reactions—either trying to adjust to it, trying to broaden the boundaries, or challenging the world and its concepts as such.