Documenting Cognitive Disability
Documenting Cognitive Disability
Abstract and Keywords
This chapter looks at two Spanish documentaries focusing on people with cognitive/intellectual disabilities. The first film, ¿Qué tienes debajo del sombrero± (2006, Lola Barrera and Iñaki Peñafiel) portrays the life and artistic work of American fiber artist Judith Scott, who worked at the Center for Creative Growth in Oakland, California and who had Down syndrome and was also deaf. The second film, Más allá del espejo (2007, Joaquín Jordà) is a look at both Esther Chumillas and also at the director himself, in both cases looking at forms of intellectual disability known as agnosia/alexia. Although documentaries, both films are works of art in their own right, and analysis centers not only on the nature of the disabilities but on their filmic representation and on the artistic qualities of the films discussed.
¿Qué tienes debajo del sombrero? (2006), by Lola Barrera and Iñaki Peñafiel
[Judith Scott] raises all kinds of questions. Is she making objects? Is she making art? Is she communicating?… Or is she merely unraveling… you know… all of her stories and everything that's been in her head for forty years that she's been trying to communicate but can't?
Tom di Maria, Executive Director of the Creative Growth Art Center, qtd. in ¿Qué tienes…?
Two of the most material among the many signs of [the paternalistic syndrome's] effects are the horrific unemployment figures for people with disabilities (hovering at a steady 80 percent even before the last recession) together with the dwindling ranks of disability-specific publications and programs.
Charles A. Riley, Disability & the Media: Prescriptions for Change (10)
While engaging the process of artistic creation at the Creative Growth Art Center (CGAC) in Oakland, California, Judith Scott produced numerous enigmatic three-dimensional fiber and mixed-media sculpture pieces that subsequently received international attention. Approaching Scott's life and art from the perspective of Disability Studies—once again understood as an expressly political project—takes us beyond the limitations of the label of Art Brut/Outsider Art and of questions of artistic communication to properly (p.118) situate her activities at the CGAC as work in both a social and economic sense. Scott's story—and her representation in a Spanish documentary film by directors Lola Barrera and Iñaki Peñafiel—suggests that in aspiring to achieve greater social and economic inclusion for such marginalized populations we must challenge the pervasive clinical paradigm that frames disability as lack and go further by cultivating sustainable, meaningful work experiences, such as that offered by the CGAC to people with developmental disabilities. Ultimately, creating art has the potential to be such a form of meaningful work. The first part of this chapter looks at the life, work, and filmic representation of American fiber artist Judith Scott (1943–2005) within the context of Disability Studies in order to accomplish a series of three nested goals.
First, discussion of her life and art provides the opportunity to assess the appropriate ways of talking about outsider and disability art, and in so doing broach the question of the limitations of traditional communicational approaches to art. In order to set up this discussion, it will be necessary to explore Scott's process of artistic creation as well as its resonance in the larger world of art and art interpretation and discourse. The first section of this chapter thus explores Scott's work within and beyond the category of Outsider Art/Art Brut, emphasizing her unique situation as a producing artist working at the Creative Growth Art Center. As a way of setting up this discussion, I rely on content drawn from two distinct textual accounts of Scott's work and life—art critic John MacGregor's superb book Metamorphosis: The Fiber Art of Judith Scott (Creative Growth Art Center, 1999) and a provocative documentary film dealing with both Scott and CGAC and directed by Spanish filmmakers Lola Barrera and Iñaki Peñafiel, titled ¿Qué tienes debajo del sombrero? (2006). Although the film is interesting in its own right on account of its intriguing formal properties, my intent is to here restrict discussion of the documentary to the level of content—mainly as a primary source of interviews with those who knew Scott best—saving a brief formal discussion of ¿Qué tienes….? for a later subsection.
Second, I want to situate discussion of Scott's artistic production within larger social processes that inform and all too often limit the day-to-day lives of people with developmental disabilities. This means going beyond long-standing views of outsider and disability art that perpetuate a certain view of the artistic product as autonomous—a world in and of itself—and recognizing the rich life experience of and the social restrictions frequently imposed on its creator. All too often, critics reduce the life of a person with developmental disabilities to fit squarely within the category of discapacity, perhaps believing that a (p.119) superficial brush with this category alone will suffice to add spice to the work of art's reception. Instead, I argue that the process of artistic creation undertaken by people with developmental disabilities may be simultaneously seen as a social and ultimately even an economic process without sacrificing any of the artistic content of their works. In Scott's case, this means moving from her art through her life history to the more immediate social (and economic) context in which her art was produced—the innovative and artistically nurturing environment of the CGAC. In the second section I argue that the requirement that art be understood in terms of communication is not merely limiting within the discourse of art as a whole, but is gravely inadequate when applied to the work of artists with developmental disabilities. As many scholars have indicated (Kittay, Love's Labor, ‘When Caring,’ 2002, ‘When Caring,’ 2001; Kittay et al., ‘Dependency’; Sedgwick; Carlson, ‘Cognitive Ableism,’ for example), disabled populations are too often seen as a special case that serves an able-bodied majority whose enforced idea of ‘normalcy’ has lent support to ‘the myth of the independent, unembodied subject’ (Kittay et al., ‘Dependency’ 445). Dispensing with the bias of the ‘cognitively abled’ (Carlson) and heeding recent work on employment and disability (Chima; Citron et al.; Contardi; Kiernan; McGuire and Chicoine; Migliori et al.; Morris; Moxley; Parmenter, ‘Living,’ ‘Quality’; Pardeck; Wehman, ‘Supported,’ ‘Integrated’; Vilà et al.) and developmental disabilities in particular (Abbott and McConkey; Hartnett et al.; Lack; Morris; Ping-Ying Li et al.) suggests that Scott's unconventional experience at the CGAC may deserve more attention as one possible way to address the full social and economic integration of such marginalized populations.
Finally, I want to look more closely at the formal properties of Barrera and Peñafiel's documentary film ¿Qué tienes debajo del sombrero?, which fittingly achieves a sympathetic treatment of Scott's life, artistic work, and social/economic context as a whole. The documentary notably succeeds in avoiding some common pitfalls in the representation of people with developmental disabilities by presenting Scott first and foremost as an artist in her own right, and also by problematizing a purely aesthetic approach to her art by emphasizing the social conditions of her life. The final subsection of this chapter's first part relies on critical literature to address the commonly superficial portrayal of people with developmental disabilities in film (Enns and Smit; Rapley; Riley). Ultimately, Barrera and Peñafiel manage to avoid the typical portrayal of disability and instead pay appropriate attention to Scott's artistic production, the rich texture of her life, and also the larger social problems faced by people with developmental disabilities more (p.120) generally. The film also notably strives to challenge the clinical view of disability noted by scholar Mark Rapley (2004) in one of its most powerful sequences. Discussion of this sequence explores the way in which Scott's art—rather than her body—is subjected to an exaggerated clinical treatment (including numerous X-rays) by a number of technicians in white coats in order to draw attention to the way in which people with developmental disabilities are routinely marginalized through the discourse of illness.
Much as Judith Scott's fiber art spins multifarious everyday objects together into a coherent and beguiling mixed-media sculpture piece, this chapter's ultimate goal is to tie together both the artistic production and social/economic integration of people with intellectual disabilities in calling for the recognition of artistic process as itself productive work in its own right. This discussion thus seeks to call attention not to the ‘work of art,’ but rather to the ‘work of (creating) art.’
Judith Scott, Fiber Artist
Judith Scott, who neither spoke nor used sign language (there is no mention of her deafness in institutional records until twenty years after her arrival), was a deaf person with Down syndrome who earned an international reputation as an artist for her mixed-media fiber sculptures. Fiber art sculptures created by Scott while at the innovative Creative Growth Art Center in Oakland have formed part of the collections at the San Francisco Museum of Modern Art, the American Folk Art Museum in New York and even the Collection l'Art Brut in Lausanne, Switzerland1 (see www.creativegrowth.org/gallery). Similarly, as a testament to how widespread appreciation of her work has become, there have been a number of insightful textual attempts to reconcile her art with her life story, perhaps most extensively in MacGregor's print account in his book Metamorphosis, but also in Barrera and Peñafiel's enlightening cinematic text ¿Qué tienes…?. I draw from the content of both in this section as a means of broaching the entwined subjects of Scott and the fiber art she produced while at the CGAC.
First and foremost it is important to understand the benefit and the limitations of the interpretive label through which many have traditionally viewed the production of art by people with disabilities. Scott was designated an outsider artist by art scholars and critics such as Roger Cardinal and John MacGregor, who themselves drew upon the French term Art Brut. As MacGregor notes ‘The term Art Brut was (p.121) introduced by Jean Dubuffet in 1945. Outsider Art, the exactly equivalent English term, was introduced by Roger Cardinal in 1972’ (3, n.6). A simple web search confirms the verve with which Judith Scott has been internationally labeled an outsider artist—even in such prestigious Spanish newspapers as El País and El Mundo (Luzán; ‘Filmando la enfermedad’). Significantly, there is reason to view the term and its application with a modicum of approval, but also with suspicion.
Jean Dubuffet—the collector credited with the movement's origins—used the term Art Brut in his attempt to find art where people least expected it. This effort was intended to widen the traditional understanding of what constitutes art. Writing of marginalized artists whom he characterized as insane, Dubuffet stated that ‘We see no reason to establish a special department for them, as some have done […] From our point of view, the artistic function is identical in all cases, and there is no more an art of the insane than there is an art of dyspeptics or of those with knee problems’ (33). Art is, after all, a form of communication—and to a certain extent, the term Art Brut and its application represented an attempt to reach out and communicate with artists who were not currently part of the conversation. Although he also somewhat predictably emphasizes the lonely worlds of outsider artists, Roger Cardinal aptly emphasizes the priority placed by the movement as a whole on questions of communication:
It has been said that outsider art at its most extreme would not be in dialogue at all with the outside world, because the urgent business has to do with self assertion. But when one looks at such work one becomes aware that that is actually what we're all dealing with, and what is important to us. And so beginnings of a dialogue emerge, and although the outsider work appears to be superficially self-enclosed and not talking to anybody, autistic, it does I think, perhaps necessarily contain the beginnings of communication. And indeed every expression in effect presupposes somebody listening, somebody that will interpret and respond. And so in the end I think that Outsider Art asks us to respond, and to do so we need to ourselves go through a similar engagement with these deep problems, with these deep difficulties, (qtd. from interview in ¿Qué tienes…?)
Although this perspective certainly has its flaws, as I will soon point out, it is important to see how the category of Art Brut in a sense advocates a more egalitarian model of social communication by extending an invitation for those previously marginalized from the discourse of art to participate in it. In this one sense, the arrival of Art Brut/Outsider (p.122) Art shook the greater art world to its core. As artists and critics struggled to redefine what constituted art they in effect took a step toward realizing a more inclusive notion of humanity, daring to go beyond the dismissive view that social pariahs such as the intellectually disabled were valueless, even if they were willing to do so—as the insular character of Cardinal's quote makes clear—only up to a certain point.
At the same time, it cannot be ignored that there is a fundamental problem with the label of Outsider Art and its application to people with intellectual disabilities, not to mention the problematic nature of the name itself and its application to other marginalized groups. The invitation extended to individuals with intellectual disabilities to participate in the discourse of art is offered only conditionally, under the proviso that they do so on terms that are not subject to their control and that do nothing to change the existing social limitations placed on those individuals. While perhaps working to expand the notion of who is capable of creating art, Art Brut/Outsider Art in a sense works against reaching a rich understanding of the lives of people with disabilities. It does this by suggesting that appreciating the outsider artist's product on purely aesthetic terms matters more than attending to the social conditions in which that art is produced and viewed. In all probability, the term ends up institutionalizing the marginalization of the artists on whose work it profits. Particularly as it relates to people with intellectual disabilities—as opposed to a more generalized stereotype of the insane hermetic artist—the term's utility breaks down. The label of Art Brut obscures the very process of exclusion, obfuscating differences among the ‘insane,’ lumping everyone together in a monolithic peripheral identity that merely reaffirms the central position of a socially mediated and produced ‘normalcy’ (Carlson, ‘Cognitive Ableism’).
Most important in this regard is that in prioritizing the art made by people with disabilities at the expense of the social conditions that necessarily inform their lives and work, we lose a sense of the larger picture. This means recognizing, as Charles Riley points out, that people with developmental disabilities suffer from unemployment figures he terms ‘horrific […] (hovering at a steady 80 percent even before the last recession)’; just as it means lamenting, as Riley does also, ‘the dwindling ranks of disability-specific publications and programs’ (10). Going beyond the artistic category of Outsider Art in approaching Judith Scott's creative expressions is a way of recognizing both those challenges that are unique to her and also the larger social processes in which her artistic production must necessarily be understood.
(p.123) The Creative Growth Art Center, where Scott worked as an artist over a number of years, provides a notable example of how to remain attentive to both the challenges specific to individuals with developmental disabilities and the wider social and economic webs in which they live. Significantly, the Center's Art Gallery (formed in 1980) was the first gallery in the world established for artists with disabilities (www.creativegrowth.org), and offers day and afternoon programs, a tapestry workshop where clients earn an hourly wage, scholarships, and the opportunity for artists to exhibit and sell their art. It is important to note that the CGAC's artists ‘receive a percentage of the proceeds from the sale of their art’ (creativegrowth. org/program-overview),2 and that some of Scott's works have even sold for thousands of dollars (‘she [Scott] sells for 5,000 to 15,000 [dollars],’ qtd. from an interview with the Center's director Tom di Maria in ¿Qué tienes…?). Currently, the Center is staffed by Creative Growth Art Instructors, Artists in Residence and additional instructors who work alongside some 150 artists with physical, emotional, and developmental disabilities (creativegrowth.org/program-overview, creativegrowth.org/about-support). There are also visiting artists who periodically spend short periods at the Center, such as Silvia Seventy—the artist credited with introducing Scott to fiber art.3 Tom di Maria, the Executive Director of the CGAC, emphasizes in no uncertain terms that ‘The Creative Growth Art Center is an art center’ (original emphasis, interview included in ¿Qué tienes…?) He continues:
We are not a therapy or rehabilitation center. We… the model for our studio is that we have artists from the community who are all working artists come here as staff people and form a partnership with our artists with disabilities so it's a true artistic model. We do not have therapists who work here and we do not see ourselves as therapists. (qtd. from interview in ¿Qué tienes…?)
While the Center is no doubt ‘conceived of neither as a school nor as a sheltered workshop’ as MacGregor notes (6), I see the CGAC as a unique integrative space where select artists with and without developmental disabilities work alongside one another in pursuit of a goal that is at once both artistic and necessarily social.4
This social aspect of the Center stems from the fact that it provides a rich social atmosphere and work environment, but also from the opportunity it creates for people with and without developmental disabilities to work together in what is best understood as a (p.124) non-clinical, even professional (artistic) environment. Stan Peterson, one of the Center's collaborating community artists (who features in the documentary by Barrera and Peñafiel), provides a glimpse into what happens there on a day-to-day basis. Of the many artists who create works of art at the Center,5 Peterson has been closely assisting Carl Hendrickson, an artist with severe cerebral palsy who makes chairs and furniture. As Peterson explains:
Carl's body is basically his measuring device, so he uses the length of his arm, the length of his leg, the length of his torso to determine his dimensions. He has a very clear kinda engineering-construction kinda mind inside a body that has a lot of physical limitations. And what Carl and I have developed over the years is a sort of communication system that's just totally individual… that indicates what he wants done, what he wants me to do for him, and how we work together. And I'm always amazed, I've known Carl for twenty years and I'm always amazed at the clear conception he has in his mind and how well he can communicate it without words and without using sign language, but just through gesture, pointing and his enthusiasm. (qtd. from interview in ¿Qué tienes…?)
In contrast to Hendrickson, Scott worked largely on her own. MacGregor noted in his critical artistic biography that ‘Judith works alone, with the object she is making her only companion. It is not unusual for her to select a table where she is not only by herself, but facing the wall’ (32).
The artistic process in which Judith Scott engaged at the CGAC took on greater and greater meaning for her as her work also gradually became more complex. Her work notably diverges from that traditionally done by other ‘outsiders’ in that Scott eschews representational forms in favor of ‘seemingly abstract forms’ (MacGregor 6). She began by wrapping fiber (yarn, string, thread, etc.) around common objects (sticks, cardboard spools, an umbrella handle, broken electric fan pieces) covering them completely and producing what MacGregor describes as objects with ‘a hidden inside, and layers and layers beyond’; the end product is almost invariably something that is ‘soft, warm, comfortable and comforting’ (35). After spending hundreds of hours observing her at work, MacGregor has charted out three periods in the evolution of her work: early work, approximating nests and cocoons incorporating traces of the human body; a middle phase, centered around poles, pole groupings, pairs and doubled figures; and a late phrase constituted by reclining figures and body/head forms. (p.125) Significantly, this ongoing artistic evolution was accompanied by Scott's own growing recognition of herself as an artist.
Her sister Joyce notes that Scott responded to her ongoing artistic endeavors by recreating herself visually—tailoring a new image for herself. Joyce speaks to her sister's fondness for wearing hats and scarves wrapped around her head:
She started wrapping the scarves around her head and wearing special hats and things when she started getting this sense of herself as an artist or that somehow those two things came together and it seemed that the more her art pieces grew and the more recognition she received the more elaborate her headpieces would become so that she sometimes would wrap, you know, three scarves and then some kind of very fancy thing on top of that so… I sometimes think of it as an expression of her self-esteem and her sense of herself as an artist. (qtd. from interview in ¿Qué tienes…?, original emphasis)
It is clear both from reading MacGregor's book and from watching Barrera and Peñafiel's documentary that Scott saw herself as an artist. The title of the Spanish directors' film—¿Qué tienes debajo del sombrero? [What is Under Your Hat?]—even emphasizes this by drawing attention to her hats, the representations of her artistic self-esteem.
Scott's situation—her identification and success as an artist and the pride she so clearly derived from this vocation—is, of course, not the norm for individuals with developmental disabilities. Scott's accomplishments are of great significance in a world in which, as the sociological literature commonly points out, ‘Despite changes in public policy, across this country, the typical working-age adult with a developmental disability is not employed’ (Morris 18). Read in this context, the CGAC has supported a novel path for the employment of such individuals that is all too infrequently made available. This path has directly confronted long-standing and limiting views of both artistic process and intellectual disability, and perhaps most importantly, it has provided a model that is attentive both to the art produced by people with developmental disabilities and also the social conditions of their lives. Andrea Lack writes that ‘The more opportunities people with Down syndrome are given, the more they are able to achieve. Today, people with Down syndrome are musicians, writers, dancers, singers, actors, public speakers, advocates, business owners, homeowners, husbands, wives and much more’ (444). Judith Scott's story calls for the addition of ‘artists’ to that list, and—all the more intriguingly—employed artists at that. While this section has sought (p.126) to characterize Scott as an artist, the next section engages Scott's life, artistic production, and work at the CGAC from a perspective that is more explicitly political. In doing so, it argues that her artistic work itself—and not solely the products of her creative efforts—should ultimately be seen both as a form of (non-linguistic) communication in its own right and also as an appropriate method of social/economic integration of which people with developmental disabilities are in dire need.
Disability Studies as Political Project: Art, Work, and Communication
One of the larger goals of this book is to draw attention to, denounce, and suggest alternatives to a constellation of ways in which people with developmental disabilities are marginalized. With this in mind, this section moves to understand Judith Scott as a producer engaged in what is necessarily work, specifically the meaningful process of artistic creation. Although it is pertinent to acknowledge Disability Studies as a point of intersection with a coalition of other political movements,6 I focus here largely on discourses of artistic production and developmental disabilities in particular. Scott's story, emerging as it does from a woman who is an artist and who at the same time has an intellectual disability, undoubtedly presents challenges to the definition, appreciation, and study of art. And yet it also simultaneously calls attention to the larger webs of capital from which people with intellectual disabilities are routinely marginalized. Whereas many attempts to advocate for people with intellectual disabilities make an explicit argument for altruistically coming to their aid, this argument is often content merely to request contributions or encourage volunteering among family or community members—balking when it comes to addressing the appropriate incorporation of individuals with intellectual disabilities into sustainable and meaningful working relationships.
Moving away from the stigmatizing view supported by the pervasive medical model, current approaches strive to recognize disability as ‘a natural part of the human experience’ (according to the Developmental Disabilities Act of 1984, P.L. 98-527 Section 101a; qtd. in Morris 19). Contemporary research has widely recognized the importance of employment for people with Down syndrome in particular, asserting that these populations ‘can be adversely affected by the limited number of jobs available to them and by the lack of independence (p.127) and control they have over their own lives’ (McGuire and Chicoine 227), and elsewhere critics point to the importance of work for people with developmental disabilities more generally (Wehman, ‘Supported,’ ‘Integrated’). Although there has been a certain degree of progress made since the 1970s and 1980s (Kiernan; Wehman, ‘Supported’), as a number of researchers have suggested in the last decade, there is much more to be done in order to more fully integrate these populations socially and economically (e.g. Citron et al.; Migliori et al.; Wehman, ‘Integrated’; Vilà et al.) A recent article published by Citron et al. in the Journal of Vocational Rehabilitation underscores that ‘employment and valued community participation appear to be frontline solutions for undoing the disempowerment and dependency cycle for people with disabilities’ (170). This struggle becomes even more important in light of the suggestions that overall the power of the Americans with Disabilities Act has been of late substantially limited by U.S. Supreme Court decisions (Pardeck), such that people with disabilities may even face increasing challenges (Chima). Disability Studies seen as a political project thus necessarily requires the exploration of a number of strategies for improving the lives and social/economic conditions of people with developmental disability.
One such area, even if it is merely one aspect of a larger political project, concerns the realm of art. Disability scholar Roy I. Brown notes that
In recent years it has been recognized that the Arts have much to offer adults with Down syndrome. There are many examples of people with Down syndrome who paint, act and dance. A few reach professional standards and obtain employment at national and international levels. But the Arts also allow for the development of self-expression and modeling of behavior. They provide opportunities to explore ideas and imagine the future. They also provide opportunities for dealing with anger and other emotions, and can encourage positive self-image. (444–45)
In a context in which scholarship on disability is pushing not merely for work opportunities but for career development (Moxley) for people with disabilities, art presents a very real possibility for self-selecting individuals, provided they are given the opportunity to test the waters as Judith Scott was at the CGAC. Art as a vocation boasts a number of benefits (e.g. the opportunity for self-expression/creative outlet, minimization of obstacles related to the work environment), not least of which is that artistic creation offers an environment in (p.128) which the person with Down syndrome may very well experience a high degree of autonomy—a situation whose benefits are touted by Anna Contardi.
Nevertheless, one of the greatest obstacles to seeing artists with developmental disabilities as producers—as artists doing artistic work—lies in the priority given to questions of communication when dealing with such populations, whether on the part of art critics grounded in the paradigm of Art Brut/Outsider Art or by the larger society. Shifting the debate from the meaning of Outsider Art as a reified aesthetic product in itself to the social and economic model of integration suggested by the CGAC allows us to move from discussion of the ability or inability to communicate linguistically/artistically toward a more contextualized, meaningful, and immediate form of non-representational communication as expressed through the social and economic integration of people with developmental disabilities as producers. This is in itself can be seen as a way of shifting from the discourse favored by the cognitively abled, for whom the communicational model of sent-and-received messages is a day-to-day reality, to the everyday lives of the developmentally disabled, whose methods of communication tend less frequently to be so direct and which are sometimes non-verbal, as in the cases of CGAC workers Carl Hendrickson and Judith Scott.
Certainly the tendency exists, as Tom di Maria voices in the quotation that serves as an epigraph for this chapter, to try and make sense of Scott's work from a communicational framework. And yet even within the larger discourse of art there is reason to avoid putting too much stock in such communicational approaches. We thus might return to di Maria's questioning in order to state unequivocally that, yes, Scott is indeed communicating without needing to establish with precision ‘what’ she is communicating through her art—it is important to recognize that Scott was unable to influence the reception of her work through interviews, writings, or public lectures as other more cognitively abled artists have been able to do. Moreover, it is important to recognize that the question of artistic communication is limiting at an even more fundamental level. Consider critic Susan Sontag's assertion—in an essay written over forty years ago—that if we require artistic communication to be as clear and concise as an intended and received message, we fundamentally misunderstand art. In that famous essay, which she titled ‘Against Interpretation,’ she insisted that instead of overly rational approaches to art that in fact limit its meaning, relevance, and potential, ‘we need an erotics of art’ (23). Scott's artistically layered creations are no less meaningful on (p.129) account of their enigmatic connotations—they nonetheless have the capacity to move us.
But the most important reason to dispense with the primacy so frequently attributed to questions of communication when dealing with artists with developmental disabilities is that this approach reflects a wider social bias (not specific to the art world) that has been denounced by disability scholars. It is interesting in this regard that theorist Eve Sedgwick has gone so far as to use a photograph of Scott embracing one of her fiber art sculptures as the cover of her wonderful work Touching Feeling: Affect, Pedagogy, Performativity (2002). Although her work does not explore Scott's story extensively, the critic gives it a prominent position, discussing Scott at the close of her book's introduction (22–24) where she notes that the cover photograph of the noted fiber artist served as ‘the catalyst that impelled me to assemble the book in its present form’ (22). It is clear that the same traditional and overly intellectual paradigm that has ‘repeatedly diagnosed [Scott and others] in terms of lack’ (Sedgwick 23) has also made the more cognitively abled, in scholar Eva Kittay's words, ‘captives of the myth of the independent, unembodied subject—not born, not developing, not ill, not disabled, and never growing old’ (‘Dependency’ 445). Recognizing that we are, as Marx wrote, ‘a species being’ (qtd. in Kittay et al., ‘Dependency’ 445) entails that we acknowledge dependence—perhaps better said, interdependence—more pervasively as the primary characteristic of human social and economic life. Kittay points to the dependence that pervades all complex societies (‘But who in any complex society is not dependent on others, for the production of our food, for our mobility, for a multitude of tasks that make it possible for each of us to function in our work and daily living?’, ‘When Caring’ 2001 570), and even makes clear that we all are subject to periods where we are even more severely and ‘inevitably dependent’ (Kittay et al., ‘Dependency’ 443)—whether as young children, older adults, or as a result of other causes. Appreciating this requires stepping back from an overly intellectual and sterile clinical paradigm that seeks to find out ‘What's in Judith's head’ in order to articulate a model of human interdependence that does not sacrifice affect to intellect, caring to cognition.7 This move is made by scholars who advocate an approach that more closely examines the foundations of its own knowledge, as in Licia Carlson's use of the term ‘cognitive ableism’ to destabilize the colonializing ideology expressed through the marginalizing term ‘feebleminded.’
Undertaking an appropriate theoretically informed approach to people with developmental disabilities, such as that provided by (p.130) Kittay, Sedgwick, Carlson, and others, is not a substitute for but rather a necessary precondition to revolutionizing the way in which these populations are situated in society socially, politically, and economically. Theory must inform practice. In this vein, one cannot ignore recent scholarly affirmations of the social and psychological importance of working environments for people with developmental disabilities. In their recent study in the Journal of Intellectual Disabilities, Hartnett et al. (2008) draw attention to the benefits of community programs for people living with intellectual disabilities, finding that ‘new-found social roles and relationships […] their hobbies and their work opportunities had a positive effect on their quality of life’ (170). Similarly, it is clear that a work identity is one of the most important aspects of the lives of people with intellectual disabilities. One study's findings ‘suggest that having employment enables people with intellectual disabilities to develop more positive self-concepts’ (Ping-Ying Li et al. 30).
Here it may be appropriate to raise the objection that providing work environments for people with developmental disabilities may open them to a form of exploitation. As Eva Kittay suggests in ‘When Caring is Just and Justice is Caring’ (2002), an essay that blends her own experience as the mother of a daughter with developmental disability with a sophisticated academic treatment of the subject of care and dependency, we must be attentive to this possibility.8 As part of a larger argument, she raises the question of whose interest such ‘work’ or ‘productivity’ serves, suggesting that work should not be invoked as a priority outside of the meaning it has for the producer her or himself. I believe it is still possible to suggest that, as I mentioned above, many different forms of work may aid in the development of ‘more positive self-concepts’ among people with developmental disabilities. But what is clear beyond a doubt is that the form of work in which Scott produced her artistic creations is evidence of the possibility, remunerative potential, and advantages of community-supported artistic work in particular. The presentation of Scott's working life in both Barrera and Peñafiel's documentary and MacGregor's book makes clear that her foray into the world of artistic work was a self-directed and gradual journey that she chose for herself and from which she derived great satisfaction. The risk of exploitation in this type of situation is further mitigated if we consider exploitation from the perspective of Iris Marion Young (1990) as an enduring situation in which ‘the results of labor of one social group [are used] to benefit another’ (qtd. in Carlson, ‘Cognitive Ableism’ 130). It should not be ignored that the existence of a community-based art center such as the CGAC works (p.131) against the possibility of exploitation by returning profits from artistic work to the same social group whose labor has produced them.
In fact, the example of the CGAC comes to pose the novel idea that a more inclusive map of the circulation of capital—one that allows people living with developmental disabilities to engage in meaningful work as producers/work that is meaningful to the workers themselves—would be, under the current system, a form of improved social communication. In his classic work Capital (1867), written during the same decade as John Langdon Down's (1862/66) descriptions of what would come to be known as Down syndrome, Marx himself offered an explanation of capital as a relation (see Harvey, Spaces 27). Scott's art pieces in particular, and their remunerated incorporation into the international art circuit, provide the opportunity to see the current limitations regarding the extent and nature of the communication that takes place between people with and without intellectual disabilities in our society as well as the possibility of improving upon this current state of affairs. To put it simply, in the present context of capital true social communication cannot exist in the face of the limited access to resources/meaningful work and the vast income disparities that characterize the situations of people living with intellectual disabilities—people who, as Charles A. Riley writes, live with horrific unemployment figures that reach a staggering 80 percent and whose barriers to social inclusion are nothing if not complex. As Suzanne Abbott and Roy McConkey make clear in their article ‘The Barriers to Social Inclusion as Perceived by People with Intellectual Disabilities’ (2006), recent work has shown that previously applied purely social models of integration for people with developmental disabilities have been insufficient at best:
Social models of disability tend to emphasize the contribution of specialist services to this exclusion [of people with disabilities], which was particularly evident during the era of the long-stay hospitals. Even so, it has become apparent that physical presence within a community does not guarantee greater social inclusion. Taking part in activities, and using local facilities, does not necessarily lead to meaningful social contact with others, particularly the non-disabled population. (276)
As ¿Qué tienes…? informs us, Scott spent much of her life in a long-stay institution in Ohio before moving to California and thriving as a result of contact with her sister and of course with the Creative Growth Art Center. One particularly significant way to make sense of this information (especially given the study by Ping-Ling Yi et al.) (p.132) is to stress the social advantages of economic inclusion. Scott's work at the CGAC provides an opportunity to see that people with intellectual disabilities can be successfully incorporated into the economy not solely as hourly workers, but also as artistic producers engaged in meaningful work. The bottom line is that, as Scott's case proves, art is a form of work—and the tangible benefits of work for the population of people living with intellectual disabilities cannot be ignored.
The next section turns to Barrera and Peñafiel's documentary not merely as visual support for the work being done at the CGAC, but rather as a sophisticated critique in its own right. As evidenced through the film's content as well as its formal cinematic qualities, ¿Qué tienes…? avoids the common mistakes made when representing people with disabilities and also launches its own artistic challenge to the medical/clinical paradigm that sees such populations only in terms of disability. Part of the political project of Disability Studies entails challenging and creating alternatives to the limited fashion in which disabilities are all too often represented in the media.
Disability and Media Representation: ¿Qué tienes…?
Barrera and Peñafiel's splendid documentary ¿Qué tienes debajo del sombrero? (2006) allows us a compelling glimpse into Judith Scott's everyday life and artistic work that few print sources can provide. Perhaps more valuable than any written account of her creative process, the film's images allow us a real-time glimpse of Scott wrapping yarn around everyday objects (such as wood, spools, shoes), and coming to establish a comparison (made explicit in an on-screen sequence title) that frames her as ‘la araña’ [the spider].9 The film was produced by Julio Medem, who is one of Spain's most celebrated directors and also Barrera's ex-husband—in fact, Barrera and Medem's daughter Alicia, like Scott, is also a person with Down syndrome.10 Yet there is reason to go beyond considering the documentary film as a mere primary source from which to glean information regarding Scott's life and work. As regards the political project of Disability Studies, the documentary takes an important stance that places a high value on the social integration of people with developmental disabilities, challenging the common and reductive tendency of the media to portray that population in stereotypical terms and poignantly poking fun at the clinical discourse that is routinely used to marginalize them socially. Informed by the political discourse of Disability Studies, the present analysis of the film attempts ‘to go beyond disability as a (p.133) simple metaphor’ (Snyder, Brueggemann, and Garland-Thomson 2). To go beyond the metaphor is at once to go beyond the staid designs of an overly intellectual thought (that which characterizes the more ‘cogni-tively abled’) and move toward a more inclusive, affective approach to people with developmental disabilities.
Considering that often in film ‘the disabled individual is effectively transformed into an object of cultural fascination, a fragment of humanity, the Other’ (Enns and Smit ix), it is clear that ¿Qué tienes debajo del sombrero? is just as notable for what it does not do as for what it does. ¿Qué tienes…? refuses to portray Scott as either dependent on caregivers or a miraculous triumph of medical progress (see Riley 4). This is not to say that the film somehow ‘goes beyond’ the fact that she is a person with an intellectual disability—a cleansed or ‘normalized’ image that is all too frequent—but rather that it fully incorporates this aspect of her life while simultaneously making another more nuanced point regarding economic inclusion.
The film presents a challenge to the stereotypical view that equates people with developmental disabilities with their disabilities alone first and foremost by portraying Scott and other adults with developmental disabilities (e.g. Donald Mitchell, Dan Miller) in their capacity as artists. The opening scene of ¿Qué tienes…? undeniably presents us with the image of Judith Scott that comes to dominate the film. Significantly, going against the temptation to frame her life in terms of her disability alone, there is no framing narrative that emphasizes that she is a woman who is deaf and who has Down syndrome. Instead, from the very beginning she is introduced to the viewer as an artist engaged in the act of production. As Joyce Scott talks about her sister, the editing cuts to Judy Scott in the act of artistic production with her fiber art sculptures of yarns wrapped around a variety of found objects, all interspersed with a shuffled series of newspaper articles with headlines like ‘Accidental Artist’ and ‘Berkeley Woman Gains Fame as Outsider Artist.’ Joyce then invokes Scott's artist persona, stating plainly that ‘getting [Judy] to leave her work is very difficult’ (original emphasis, qtd. from interview in ¿Qué tienes…?). These initial edits reveal that, in the simplest terms, this is a film about an artist, her craft, her work environment, and, ultimately, even her economic remuneration.
The opening credits roll over a sequence depicting Scott's bus trip to the CGAC, and, as both the sequence and its overlaid musical track of an energetic operatic piece by Maurice Ravel draw to a close, we see the film's most pertinent and lasting image: Scott seated outside the Center, with hat and scarf atop her head. As she is presumably (p.134) waiting for the Center to open, the still camera accentuates her inner confidence as an accomplished artist. The importance of this image lies in the central role played by the artist's hat and scarf as indicators of positive self-esteem and a cultivated artistic persona. As Scott steps down from the bus, she wears a purple scarf over her hat. Just after we see her take a seat, a jump-cut makes her hat and scarf both instantly disappear off the top of her head. Next, we see Scott in the process of wrapping and tying the scarf directly around her forehead just above the eyes, and once again resituating her hat, this time above the scarf, and not below as before. This cinematic stunt is, in essence, the portrait of Scott as an artist: that is, Scott and her hat, the outward expression of her artist persona.
Whereas other films on people with intellectual disabilities have yielded to a biographical approach that risks allowing their disabilities to eclipse their own identities as people (Riley references this trend in chapter 4 of his book, titled ‘I'd Like to Thank the Academy: Losing Focus on Disability in Movies and Television’), ¿Qué tienes…? expresses a subtle yet significant shift away from this position by focusing more broadly on the artistic production by Scott and numerous other artists at the CGAC.11 This is not solely a story about Judith Scott (in this sense, it is noteworthy that the title, although it is drawn from Scott's story, does not even include her name).12 Instead, the film captures the realities of a group of artists, focusing more on artistic process and the working environment unique to the CGAC than on the finished work of art. The filmmakers' interest seems to lie in the individuality of these processes, in discussions of artistic influences. Subsequently, the film comes to pose a question that goes beyond the often essentializing discourse of people with intellectual disabilities as infirm and engages the value of artistic production in terms that are at once social and economic—the artists we observe are indeed producers.
The very first words spoken about Scott after the opening credits of the film are, in this sense, quite telling. In fact, they emphasize her working identity as a producer and not the fact that she is a person living with an intellectual disability—it is the CGAC's Tom di Maria who plainly states that ‘Judy Scott's worked here for I think twenty years now’ (my emphasis). Of course a short biographical story follows, but importantly the viewer is encouraged to see this as filling in her character and not encapsulating it or completely defining her—just as one would expect to find in any other artist's biography. It helps that the Center's Executive Director presents this information in a matter-of-fact tone—how she was born in Ohio a twin, how (as was, and as perhaps still is, unfortunately all too common) at a young age Judy (p.135) was taken to a long-stay institution in the middle of the night straight from her bed. Yet significantly, in the middle of the biographical sketch delivered through the voices of sister Joyce and CGAC director di Maria, we are, in fact, seeing images of Scott's art. In the midst of Scott's chronological biography we watch as a series of eight professionally styled still photographs of Scott's art are intercalated in such a way as to emphasize that this is an artist's biography just as much as it is a condemnation of social marginalization (and also a more personal story of twins meeting again after a long period of time spent apart). In its presentation of Scott the film achieves a delicate balance between Judith Scott, producer, and Judith Scott, a person living with intellectual disability. Appropriately, given the directors' attempt to steer clear of a heroic ‘supercrip’ portrayal of Scott, many sequences in the film draw attention to her propensity to steal things (among those specifically mentioned are car keys and shoes). These sequences help to flesh out Scott's full range of personality traits—her thefts seem to be at the same time both an endearing and a frustrating trait to her family and the staff of the CGAC.
It is notable that rather than essentialize people with intellectual disabilities, the film is consistent in understanding intellectual disability as an interactional product, recalling Kittay's insistence that we are all dependent on others (‘When Caring’ 2001) as well as Carlson's use of the term ‘cognitively abled’—that is, people with intellectual disabilities are produced, as their social identity is imposed, negotiated, and contested (Rapley). In his work, appropriately titled The Social Construction of Intellectual Disability, Rapley notes that people with intellectual disabilities are frequently observed clinically through the lens of standardized measures and interview procedures, and very rarely through ‘naturally occurring social interaction’ (3). As if responding directly to this clinical paradigm, the film notably makes an effort to show such naturally occurring social interaction from start to finish. ¿Qué tienes…? shows Scott walking into work, Scott waving hello with a smile on her face to someone offscreen, waving to someone else offscreen as she then walks to her workspace, watching TV on the couch where she interacts with another woman, greeting her sister with a hug, waving off a woman who touches her shoulder, eating ice cream at a communal table, peeling a banana while in the car with her niece, putting napkins on the dinner table, and so on. A somewhat longer sequence of shots of Scott late in the film uses the quotidian to great effect, filming her at a group table with her magazines, following her from the table as she washes her hands and repeatedly uses the automatic towel dispenser,13 and ending climactically with her lifting (p.136) one of her larger pieces of art—thereby thoroughly immersing the viewer in her daily routine. Most significantly, the film's focus on the routines and interactions of everyday life eschews the approach used in many prime-time news specials on people with disabilities—it is lamentable that, as J.I. Charlton notes, ‘In the United States surveys have shown that more people form attitudes about disabilities from telethons than from any other source’ (qtd. in Riley 10). Instead of a more mainstream approach that uses footage of the everyday as the mere background for clinical or biographical narration, here there is no overdubbed narration at all. The footage of Scott's everyday life—a working life—is allowed to speak for itself. In this way, the documentary magnificently wages its own war in the sphere of the quotidian, employing the banality of everyday life as a significant contrast to the exaggerated highs and lows which tend to structure the more mainstream media's representation of people living with disabilities (Riley).
At other times the film's coverage of naturally occurring social interaction deals less with other people and centers on Scott's work environment—which is of course always already social: we see her unstacking the chairs from tables near her workspace, letting out a deep breath after some strenuous rearrangement of objects and materials in her workspace before scooting her chair in and getting down to work—and we most notably see her concentrating while interacting with her art in the very moment of producing it. In fact, as the film progresses, the sequences of Scott absorbed with her art become noticeably longer and more entrancing as the camera angle shifts at times to a bird's-eye view. In these numerous sequences and others, everyday content is used in a manner consistent with the overarching editing technique (intercalated images of her art and a marked lack of the extradiegetic narration that so often accompanies documentaries)—all to underscore her identity not merely as an artist, but moreover as a producer engaged in remunerated artistic work.
Perhaps the film's greatest feat is the cinematic challenge it presents to the medical/clinical discourse concerning intellectual disability (noted by Riley) by directly underscoring the inadequacy of clinical observation, measurement, and interview procedures to give us insight into the lives and experiences of people with developmental disabilities.14 One of the last sections of the documentary hammers this critique of medical discourse home through a captivating sequence in which many of Judith Scott's three-dimensional fiber art pieces, some resembling bodies or body parts, are serially subjected to imaging by an X-ray machine. The sequence, which exploits the cinema's capacity for suspense as well as any blockbuster action film does, starts with (p.137) CGAC collaborating artist Stan Peterson repeating and responding to a question presumably posed by the filmmakers: ‘What is inside Judy's sculpture?… well, you know, there's all sorts of things.’ This enigmatic answer is followed up by a statement by another CGAC community artist staff member, Michael Hall, who says ‘We've often wanted to do an X-ray of her sculptures to see what is inside.’ The sequence that follows is one of the most energetic of the film, contrasting with the slow pace of the previously shown un-narrated shots of Scott's's everyday working life. Here we have more rapid camera movement, mysterious music that builds and contributes to the tension inherent in the search for meaning behind Scott's work, frequent cuts from one person to another, and voiced statements all edited together to deliver a sequence that combines the speed of a car-chase with the excitement of an accelerating intellectual inquiry. The X-ray technician appears to set and re-set the machine at a dizzying pace while Peterson works from his previous knowledge toward a list of the possible objects that may lie in wait inside Scott's art:
It used to be the cones that wool came on, the skeins—ah—that wool's wrapped around, would be always a component. It used to be cut out pieces of pine, of wood, fabric scraps or pieces of cardboard… but also it's all kinds of things, like an electric fan that might be taken apart, maybe a bicycle wheel, it could be a chair, there's a children's chair here that she started wrapping, there was a grocery cart, off the street missing two wheels that a homeless person had left out in front at Creative Growth.
The rhythm of the sequence is astounding—we close in on monitor displays, the moving parts of the cumbersome X-ray machine shot from below, developed X-ray negatives showing the shapes of what appear to be zippers and other small metal objects, all in hopes of finally discovering once and for all the ‘enigma that makes Judy's art interesting’ (Peterson, qtd. in interview from ¿Qué tienes…?).
A powerful statement is made by the X-ray technician as he places one particular art piece on the X-ray bed: ‘Look's like a little person this one, let's give it the treatment, just for fun.’ Multiple camera shots from overhead and the side visually reinforce the idea that this piece is a person on a bed waiting to be X-rayed. But this seems to be the filmmakers' point precisely—whereas the medical paradigm and its limiting clinical view of people with intellectual disabilities would frame Scott herself as the ill body to be diagnosed, significantly it is not Scott whom we see on the X-ray table. Instead we see her (p.138) artwork waiting to be diagnosed, observed, and categorized by white-coated professionals. The numerous X-rays on the lighted wall-viewers display not her body but her art, leaving Scott out of the picture—and out of the examination room—free to continue her artistic work far away from the clinical gaze.
This tongue-in-cheek attempt to literally X-ray Scott's work and expose the enigma of her art is successful, indeed, in breaking free from limiting clinical views of people with intellectual disabilities. But it also affirms the properly non-rational role of art signaled by Sontag and encourages a more open and inclusive view of communication itself. The sequence's playful attack on the tendency to reach conclusions all-too-quickly, one that notably runs throughout both clinical and artistic discourses, manages to emphasize communication itself as an ongoing process, and in this sense it squares with other scenes in the film. Elsewhere, just as the directors largely refuse to portray Scott as either a ‘sadcrip’ or ‘supercrip,’ the documentary refuses also to tout the false benefits of what passes for ‘facilitated communication’ (see Riley 23). Rather than portray people with intellectual disabilities as the passive recipients of aid through a lens that borders on colonialism in which they are dependent on others to express themselves, the film overall supports the idea that people with intellectual disabilities are in fact already expressing themselves, that this expression needs to be valued—it is just that this form of expression is poorly understood through the traditional frameworks that guide clinical observation of people living with intellectual disabilities. By lampooning the clinical gaze so often directed at these populations, this important and truly cinematic sequence recalls director Tom di Maria's previous insistence that the CGAC is not a therapy center, but rather a ‘true artistic model’ (his words, (¿Qué tienes…?). The documentary about Scott's life and work is itself a complex artistic product that provides a reason to dwell on the connection between her life and work, but that goes beyond the limits of standard biography to engage the life and work options of people with developmental disabilities and to more broadly denounce an overly intellectual paradigm of disability. Most significantly, it provides visual evidence that people with developmental disabilities may even become (remunerated) career artists if they are provided with the proper opportunities.
So far, this chapter has gone beyond the limiting discourse of artistic communication in order to envision artistic creation as a form of work. In this way, it has resonated with a wider call for the reconciliation of social and economic battles for the integration of people with intellectual disabilities. Facilitated by the CGAC's attempt to (p.139) challenge both popular understandings of people with intellectual disabilities and traditional models for their social integration, Judith Scott found meaning in the work of (creating) art. Scott's story and circumstances suggest that there is no social progress without economic progress—and, provided we are talking about meaningful work, this is true for people with intellectual disabilities just as it is for us all. Ultimately, contemporary scholars working in the still emerging field of Disability Studies are in effect recuperating the original thrust of cultural studies research. It is worth remembering, as Raymond Williams reminded us in a lecture from 1986, that the forerunners of cultural studies demanded the relation of academic subjects to the ‘life-situations which people were stressing outside the established educational systems’ (152). Judith Scott's story, her work at the CGAC, and her depiction by Spanish directors Lola Barrera and Iñaki Peñafiel all point toward the complexity and significance of life-situations that have gone without scholarly attention for much too long. In the next section, this chapter turns to another intellectual disability that all too frequently goes unnoticed, visual agnosia.
Más aliá del espejo (2007), by Joaquín Jordà
In May 2002, El País published an intriguing article by Rafael Méndez titled ‘La chica que ve sin ver’ [The Girl Who Sees without Seeing] that began with the simple sentence: ‘Esther Chumillas no ve lo que ve’ [Esther Chumillas doesn't see what she sees]. Strangely, writes Méndez, Esther—born in Cuenca 18 years previously—can read, write, and recognize colors, but her visual agnosia means that ‘Ve, pero la información que llega a su cerebro se pierde y no llega a retener lo que ha visto’ [she sees, but the information that reaches her brain gets lost and she can't retain what she has seen]. A poorly treated bout of viral meningitis left her occipital lobe affected—the part of the brain that is responsible for sight (she also lost her lateral vision and became epileptic). The film Más allá del espejo begins with a shot of director Joaquín Jordà citing the title and author of this El País article on Chumillas, after which he reads a few lines of its text. In this first shot, a still camera frames only the director at his desk. His reading is noticeably slow and perhaps a bit uneven as well. What we see as he begins reading is a scene that capitalizes on the over-abundance of visual stimuli that characterizes the cinematic image—as opposed to the relative economy of signs in written narrative. Due to what film (p.140) theorist Kristin Thompson calls ‘cinematic excess’—or the almost infinite number of the cinema-signs that Pier Paolo Pasolini once baptized with the name of ‘kinemes’ (see Pasolini 201–03)—this initial scene overflows with numerous objects crowding his desk, and hundreds of books lining the shelves on the walls behind him. Hardly a single spot on the desk, wall, or floor—that we can see from our perspective as viewers—is clear of objects. Moreover, Jordà's shirt is perhaps purposely chaotic: it features a stylized print of seemingly African origin with dizzying rows of geometrical designs of alternating patterns and colors. The effect of this chaotic shot composition—formed through the unique collaboration of set, mise-en-scene, and costume/props—is that the viewer struggles, initially, to make visual sense of what she or he is seeing. Whether this is intentional or not—and I believe that Jordà's reputation as a filmmaker suggests that it is intentional, conceived to make the simple act of ‘seeing’ difficult—we nevertheless have here a wonderfully instructive beginning to a film whose focus is on the complexity of both visual fields and human relationships alike.
As has been noted by critics, Más allá is not merely a splendid documentary film, but also an autobiographical enterprise of sorts. The film's director had a stroke in 1997 that left him with a neuro-visual impairment generally similar to that of his film's protagonist: ‘Jordà conoció a la chica y durante casi cuatro años la fue filmando, para dar cuenta de su evolución, pero también para contrastar los síntomas de Esther con los suyos propios’ [Jordà met the young woman and filmed her over the course of almost four years, in order to understand her development, but also to contrast Esther's symptoms with his own] (Torreiro, ‘El emotivo’; see also ‘Más allá’). While Esther has agnosia, Jordà has alexia. Their disorders are presented, however, as points on a spectrum—an encounter with a Catalan woman named Paquita late in the film allows Esther to frame their overlap for the viewer: while Paquita is ‘pure alexia,’ and Esther represents ‘pure agnosia,’ Jordà has a mixture of both agnosia and alexia.15 The film continually encourages the viewer to indulge in this sort of comparison through the introduction of several other minor characters who have complementary visual disturbances and through a persistent focus on both Esther and Jordà. Keeping the first shot of the film in mind, the inclusion of the word espejo [mirror] in the film's title points to the central trope of the documentary: Esther is a sort of mirror for Jordà, just as the documentary screen itself becomes a way for the viewer to reflect upon the human significance of the story they share. Going beyond a single reflection, Más allá del espejo functions as a three-way mirror of sorts, if such a (p.141) thing exists. Right from the start, our visual struggle to make sense of the chaotic composition of the initial shot nudges us ever so slightly to try and imagine what it would be like to be in either of their shoes. The result is a potentially humanizing appreciation of the complex worlds inhabited by people with such visual disturbances—and ultimately also a poetic reminder of the frailty of the human condition, more generally speaking.
Jordà, who was born in 1935 and who died of cancer in 2006, is known as ‘Uno de los padres de la Escuela de Cine de Barcelona’ [One of the fathers of the Barcelona School of Cinema] and counts the following among his noted film projects: Dante no es únicamente severo (1967, with Jacinto Esteva), Portogallo, paese tranquillo (1969), Lenin vivo (1970), Numax presenta (1979), El encargo del azador (1990), the fiction film Un cos al bosc (1996), Monos como Becky (1999), and De niños (2004) (Torreiro, ‘Joaquín’; see also EFE; Ibarz).16 He was recognized for his substantial contributions to cinema by being posthumously awarded the coveted Premio Nacional de Cinematografía [National Prize in Cinematography] (EFE). Jordà died before Más allá del espejo was finished, and it was ultimately put together by the film's editor, Núria Esquerra (Torreiro, ‘El emotivo’). Nevertheless, one sees that he has been largely responsible for the film's successful engagement with both the theme of neurological-visual disturbances and also its commentary on the more metaphorically visual theme of self-reflection. The first section that follows looks somewhat matter-of-factly at the film's presentation of Esther Chumillas's story and the dialogue that Jordà begins to establish between the portrayal of his protagonist, Esther, and the complementary narration of his own story. That is to say that, at the most obvious level of interpretation, the director clearly wants to bring the issues associated with Esther's agnosia and his own alexia to his viewer's attention. The second section, however, looks into the film's more universal, pointedly metaphorical, and specifically cinematic contribution by going—as the title itself instructs—Más allá del espejo [Beyond the Mirror]. Importantly, Jordà throughout uses the somewhat haunting and recurring image of a seemingly life-size, paper-mâché chess game to give the film a certain pensive, tense, and even dramatic tenor. Most of the pieces in fact bear sculpted, iconic representations that resemble the faces of specific characters in the documentary. As the chess match unfolds, these scenes parallel and ultimately heighten the challenging nature of the material as we grapple with the meaning of these visual disorders and struggle to put ourselves in the place of the protagonists—which is, in the end, just what Jordà wants us to do.
Beginning with the initial scene—in which Jordà reads from the El País article describing Esther's unusual if not astonishing circumstances—Más allá del espejo presents the viewer with a puzzling series of questions. What is the nature of Esther's visual difficulty? How does it impact her life? How has she learned to cope? What does she have in common with Joaquín? What interests Joaquín about her case? In this sense, reading from Rafael Méndez's published El País piece meets certain practical goals—it sets up the problem in basic terms and gets the viewer thinking. But having Jordà the director read it to us himself on screen is also a sly way to anticipate the more overt introduction of his own story into the film at a later point. As we listen to his evenpaced and deliberate voice, he occasionally stumbles here and there, perhaps a product of his own difficulties with reading as a result of the alexia caused by his previous stroke (on the way reading is affected by alexia see Arguin and Bub 149; Coslett and Saffran). At this point, however, the viewer is being actively encouraged to identify with Jordà against Esther. It seems, at first, that it is she who is the topic of the film, not the director himself. Only as the documentary progresses will we be forced to challenge this misunderstanding. Here, it is provisionally permitted as a way of managing the viewer's expectations and making the shift toward the co-protagonism of Esther and Joaquín that is much more meaningful.
As the director reads from Méndez's article in the first sequence of the film, the visual editing cuts away to feature a still-camera long shot and a subsequent mid-shot pan of Esther walking from left to right against the backdrop of a high wall that seemingly provides a sort of anchor for her pre-conscious perception of her environment. Jordà's voice-over continues throughout: ‘Padece agnosia visual, una rara enfermedad que no tiene tratamiento. Por eso, Esther camina sin problemas, pero no sabe por qué calle camine. Por eso no puede reconocer a su padre, ni describir el coche en el que se acaba de subir sin ayuda’ [She suffers from visual agnosia, a rare problem for which there is no treatment. Because of it, Esther walks with no problems, but she does not know which street she is on. Because of it, she cannot recognize her father, nor describe the car from which she has just exited without any help whatsoever] (1:15–1:43). Through this editing, Jordà momentarily affirms the (falsely) objective premise of the camera—Esther is initially shown as if she, alone, were the problem to be analyzed. This sequence is both an illustration of and a visual anchor for the problem (p.143) of her visual agnosia, but the way in which it is filmed—first framed by Jordà, then captured in still camera, and finally in a moving panoramic view—lends the problem a dynamic quality and a developing energy that will be pursued throughout the film.
In the next scene we accompany Jordà and his crew down a narrow street lined with white buildings as we go to visit Esther at home. The voice-over continues to feature text from Méndez's article: ‘Lo más raro es que esta chica, nacida en Cuenca hace 18 años, puede leer y escribir, y reconocer los colores. Eso es lo único que le permite tener cierta autonomía’ [The strangest thing is that this young woman, born in Cuenca 18 years ago, can read and write, and recognize colors. That is the only thing that allows her to have a certain autonomy]. It is significant, however, that the mention of color occurs along with the overwhelmingly white image of the buildings on either side of Esther's block, almost as if we are being purposely thrust into a world similar to hers—one in which color plays a huge role. At the moment when Jordà enters her building, he turns back to talk to the members of the film crew, one of whom responds, thus breaking down the illusion of documentary authority and objectivity (1:50). This challenge to the apparent objectivity of filmic images will be, in fact, routinely asserted throughout the film. As discussed below, Jordà not only figures more and more prominently on screen, many times addressing the camera directly, but his voice and visual image even interrupt a number of scenes where he is not the focus. Reaching Esther's floor of the apartment building in this first sequence of the film, Jordà continues to look back at and acknowledge the filming crew in the process of ringing first her neighbor's buzzer and then her own. This is perhaps another indication that Jorda's reading has been affected by his stroke—we learn later that he has difficulty reading numbers in particular—although this clue may be subtle enough to be disregarded by the viewer who is seeing the film for the first time.
At 8:48, however, the film finally reveals decidedly that Jordà is to be a co-protagonist. When, seated on a pair of yellow couches in a lobby, a woman asks him about his alexia, he responds at length:
El concepto global es de agnosia… Alexia es una manifestatión de… Alexia… La alexia es la dificultad o la imposibilidad—o sea hay grados—en atribuir al signo-letra el valor que tiene comunmente. La cual se traduce en la dificultad o la imposibilidad, sobre esto hay grados, de leer. El origen es una dificultad de trasmisión entre el ojo que hace la entrada del objeto y la transmisión al cerebro—allí hay un barullo y esa trasmisión no se produce, o llega deformada […] No tiene (p.144) curación porque sea por una infusión de sangre o una hermorragia sobre una zona, sea por un traumatismo que ha amputado o lesionado una zona del cerebro mínima—son zonas pequeñísimas, pero son las que contienen esta gracia, esta habilidad, esta cosa—sea porque sea el cerebro es una materia que es no recuperable.
[The global concept is agnosia… Alexia is a manifestation of… Alexia… Alexia is the difficulty or impossibility—which is to say there are degrees—of attributing to the letter-sign the value it normally has. Which translates to the difficulty or impossibility, there are degrees of it, in reading. Its cause is a difficulty in transmission between the eye that registers the object and the transmission to the brain—there is a disorder there and this transmission is not produced, or it arrives distorted (…) There is no cure because, whether it is on account of an influx of blood or hemorrhage in a zone, or because of a traumatic event that has cut off or lesioned a tiny part of the brain—they are really small areas, but they contain this gift, this ability, this thing—whatever the cause, brain matter is irrecoverable.]
Jordà's informative and lengthy reply (8:49–12:14)—in which he goes on to speak of a few isolated moments in which his reading ability has briefly, if ephemerally, returned—squarely positions him on an equal footing with Esther as yet another focal point of the documentary. He is not merely a seasoned director who is capable of framing our understanding of her unusual condition. In addition, he is also worthy of screen time in his own right. During what is, in essence, an on-screen interview with the director, his intermittent glances at the crew member holding the camera (9:00, 9:03, 9:18, 9:30, 9:34, 10:04, 10:22, 11:00, 11:15, 11:24) or even what seem to be stares straight-on at the lens of the camera itself (9:07, 9:10, 9:27, 9:48, 9:57, 10:19, 10:36, 10:38, 10:50, 11:06, 11:10, 11:40) continue to acknowledge the film's direct communication with the viewer. One of the film's aims, it seems, is to educate the viewer in the variety of neuro-visual disturbances that exist. But Más allá… cannot be explained solely in terms of that aim.
Joaquín and Esther have an interesting relationship wherein he approximates not only the role of a peer sharing the experience of a permanent visual disturbance but also that of a father figure of sorts. Both of these roles become particularly clear in an important sequence at the approximate mid-point of the almost two-hour film (beginning at 52:25), when the crew spends time in a hospital as Esther undergoes a series of tests. We watch as Jordà's co-protagonist sits in front (p.145) of a mirror alongside an unnamed clinician clad in a white coat. The latter puts a card in front of Esther, but we cannot see what it depicts. As Esther tries to come up with an answer, we wonder ourselves what is on the card, and have no idea—yet another indication that Jordà wishes to thrust us somewhat unprepared into the uncertainty that characterizes Esther's world. The image on the card, one presumes, has been purposely hidden from our view by the staging of the scene and the camera's deliberate positioning. We listen and watch as she mounts what seems to be an educated guess of sorts—‘a radio’ she says. Only now are we shown that the image depicted is of a television—although her guess is close, the antennae have led her to the wrong conclusion. The next drawing is an iconic image of a loaf of bread, but she remains puzzled (for an in-depth discussion of this recognition problem associated with agnosia, see Koch 219; more generally see Farah, Visual). The next card contains photographs of a child's face, and Esther discusses how she only recognizes emotions through movement in faces but not the details inherent to the expressions themselves (with the next card she mistakes a picture of Clint Eastwood for Julio Iglesias, 55:33). When shown a photo of a waterfall she guesses that it is a Roman aqueduct, and even helped with clues by the clinician regarding the colors she sees—even when directly told that the image is that of a waterfall—she cannot recognize it (Jordà's voice can be heard offscreen here, an example of the way we are persistently reminded of his co-protagonism, 57:15).
At 1:01:28, it is Jordà's turn for the picture exercise, and we see him seated in front of the mirror. This time we see the image at the same time that Jordà does. He does well with geometrical shapes, but when shown a drawing of a pair of eyeglasses he thinks they are a bicycle. He gets the television picture without problems, but when shown a trumpet he talks himself through the musical instrument's parts and arrives at the erroneous conclusion that it is a saxophone. Only after this first incorrect guess does he begin to make gestures with his hands as if playing the instrument—a strategy he exaggeratedly models for Esther as a way of helping her work through her pre-conscious grasp of images—moving on to the conclusion that it is a trumpet. When shown a photograph of the cross-section of a lime, he thinks it is an orange (unlike her, he doesn't see colors).17 The clinician then disappears and we see both Joaquín and Esther working their way through a series of image-cards together—first a clock, then a dancer, and a strange final image we cannot yet see: is it a nut? a piece of cheese? Instead of these guesses, the camera finally shows that the image is that of a slice of watermelon (on (p.146) agnosic disorders of object recognition see also Davidoff 92–94; cf. Humphreys et al. 65).
Throughout, Joaquín is a partner and peer to Esther—and yet he is greatly conscious, too, of his role supporting and encouraging her. The pair similarly work together as a team to support another minor character—a woman named Elvira whose specific disorder, although unspecified, must be a type of agnosia or alexia. When speaking with Elvira, Joaquín takes the opportunity to proudly boast of what Esther has been able to achieve, including her persistence at studying.18 When Esther must get blood drawn and have a brain scan, he tries to keep the mood lively by making jokes and prompting her to showcase her knowledge of agnosia for the viewers watching the film. Later on, we learn that she is moving in with a boyfriend and as they show Joaquín around the apartment he prompts them to talk about how they met and even prompts the pair to kiss on screen—perhaps as a father might embarrass his daughter while simultaneously showing his approval and acceptance of her choice of partner. Many of the final sequences of the film swell with a kind of fatherly pride as we see Esther take (and presumably pass) her exams, on the way to becoming a licensed special education teacher. The camera captures Joaquín interviewing a co-worker at the school where Esther works, proudly prompting her to say positive things about his co-protagonist. These scenes solidify an image that has been developing throughout the film—of the two of them as a nuclear unit of sorts, a mutually supportive and close couple: Joaquín and Esther are, simply put, the co-protagonists of Más allá del espejo.
Theirs is, however, not a relationship that is closed-in on itself, but rather one that turns outward to embrace and help many others with similar problems. The composition of a key shot in a scene featuring the aforementioned Elvira is a wonderful visual illustration of the meaning of the film's title. In this scene (1:14:26–1:16:51), Esther and Joaquín team up (joined by a few others) to provide encouragement, support, and even hope for Elvira, who has apparently not had much time to get used to the idea of having her own visual disturbance, one that is severe if unexplained. The camera captures Elvira against the backdrop of a mirror and more or less straight-on. Her neck and eyes are turned toward her interlocutors who sit in-off – off of the left-side of the screen. To the right of her image we see the reflection of both Esther and Joaquín, whose images face to the right, seemingly away from where Elvira is seated. At the far right of the screen we see the back of Elvira's head and her jacket, such that she appears doubled while the others appear only in the mirror reflection. While the scene (p.147) may be relatively confusing visually, at the level of sound there can be no doubt that the three of them are having a discussion:
Joaquín (to Elvira):
Hace un rato cuando has empezado a hablar has estado a punto de echarte a llorar […] Y ahora no te costaría nada volver […] Pues eso no está ni bien ni mal […] Pero también quiero decirte que […] con la práctica […] dentro de un tiempo, o sea día a día, semana a semana […] vas a notar que vas para adelante. [Just before when you started to talk you were about to start crying (…) And it wouldn't take much for you to do so now (…) Well, that is neither good nor bad (…) But I also want to tell you that (…) with practice (…) after a while, or rather day by day, week by week (…) you'll notice that you are moving forward.]
Esther (to Elvira):
¿Qué te he dicho yo antes? Yo te he dicho antes que, que no me acordaba hasta de multiplicar […] Yo no sabía qué era eso […] No sé pues, toca aprender. [What did I tell you before? I was just telling you that, that I didn't even remember how to multiply (…) I didn't know what that was (…) I don't know, you just have to learn.]
Ya pero… [Yes, but…]
Esther (to Elvira):
No, ‘ya pero’ no. ‘Ya pero’—después ponerse alguna vez, otra vez, y otra vez, y otra vez hasta que me salga.[No, ‘Yes but’ nothing. ‘Yes but’—and then try it again and again until you get it right.]
Que te salga, claro. [Until you get it right, sure.]
Throughout the discussion, the mirror takes center stage, marking a border of sorts between Joaquín and Esther on one side (in the reflection) and Elvira on the other, closer to us in fact. The implication is that Joaquín and Esther have successfully passed on to the other side of the mirror—the titular Más allá del espejo, perhaps better translated for English readers as The Other Side of the Mirror or even the somewhat loaded but nonetheless accurate title Through the Looking Glass—while Elvira still remains on this side, our side. Whereas the co-protagonists have found each other—found a way to cope and also a supportive community—Elvira remains on this side of the mirror, feeling isolated and alone, not understanding the nature of her visual disturbance, unable to cope or perhaps even to hope for something better than what she is experiencing in that moment.
As viewers (the majority of whom do not have visual agnosia or alexia, one might presume—particularly given Jordà's intention to speak to a wider audience), we notably share Elvira's world, a world (p.148) in which agnosia/alexia is a complete rarity, an unfamiliar and seldom understood condition, even something to fear. Even so, at the same time we are afforded a privileged glance through to the other side for the duration of the documentary itself. Jordà is, as explored above, relentless in attempting to communicate with the viewer directly, modeling his own acceptance of what is, in effect, another kind of normal. In addition to his own appearances on camera and his focus on Esther, there are also numerous explanations of various personal experiences of living with certain visual disturbances given by other minor characters in the film—not only Elvira and the aforementioned Paquita but also an unnamed blind woman with a guide dog and another similarly unnamed woman who cannot see anything on her left side. Similarly, a scene filmed in the hospital gives the viewer a kind of brief educational lesson—featuring a clinician who uses color neural images to illustrate the bodily processes involved in various neuro-visual disorders. Jordà's communication with the viewer through the documentary is itself a form of education, as he strives to make people on this side of the mirror aware of what life is like on the other side. This film is in a sense relatively timely, as—perhaps like autism (see chapter 2, ‘Envisioning Autism’)—a better understanding of visual agnosia has only developed over the past few decades or so (see Farah, ‘Specialization’ 134, Visual 2–5; Humphreys et al. 63–64).19 Apart from its pedagogical aspects, however, another part of the success of Más allá del espejo lies in the way its director mobilizes a somewhat obtrusive chess-game metaphor as a way of rendering Esther's struggle in a more poetic fashion—and thus imbuing it with a wider human significance.
The Chess Game as Metaphor: From Disability to Human Universals
The numerous intercalated chess-game sequences are a reminder that Jordà's aim in Más allá del espejo is not solely pedagogical or informative. This is definitively not the filmic equivalent of a book like Martha J. Farah's extremely informative Visual Agnosia: Disorders of Object Recognition and What They Tell Us about Normal Vision. In no case does the director attempt an organized taxonomy of visual disorders, such that the film's viewer finds that the difference between agnosia and alexia, and their overlap in Jordà's case, is left imprecise and ultimately unexplained. Although there is some degree of information about visual disorders included in the film, the focus is not on the medical side of things, but on the social side—and it is here, of course, (p.149) that social-filmmaker Jordà is at his best. The chess-game sequences function to suggest the importance of the social context in which the mere matter of the individual cases of agnosia and alexia unfold. Certainly, however, the medical study of these disturbances has a wider significance, as noted by Farah: ‘One of the reasons for studying the cognitive impairments that follow brain damage is for the clues they can give us about normal cognition’ (Visual 1)—but Jordà delivers a film that attempts to say something, also, about human relationships in general. Más allá del espejo stands out as a meditation both social and personal: its deeper meaning pertains to the ways in which we are capable of providing mutual support to each other, or of standing in each other's way; and to the ways in which we confront and ultimately defeat the unknown.
The trope of the chessboard is more than merely a disposable side-story. There are a total of 13 scenes that capture the board and the various movements of the pieces, and the sum of the duration of these scenes taken together totals over nine minutes (chessboard#1, 3:25–4:07; CB#2, 7:49–8:37; CB#3, 18:39–19:14; CB#4, 25:50–26:46; CB#5, 45:56–46:40; CB#6, 1:11:22–1:11:55; CB#7, 1:16:54–1:17:35; CB#8, 1:21:56–1:22:14; CB#9, 1:26:17–1:27:13; CB#10, 1:33:53–1:34:28; CB#11, 1:43:40–1:44:01; CB#12, 1:48:08–1:48:54; CB#13, 1:53:02–1:54:08). The scenes range in length from 0:18 seconds to 1:06 minutes, and the most time that goes by between any two of them is 24:42 minutes, such that they are relatively evenly spaced throughout the film's almost two-hour duration. Significantly, however, the time between the scenes is, on average, much reduced during the second hour of the documentary, effecting an ever-greater emphasis on the themes symbolized through the game as the film reaches its conclusion.
The chessboard is first prominently introduced along with the title screen, following the initial sequence described above in which we see Jordà reading from El País and ultimately hunting down Esther's apartment along with his crew. In CB#1, we see immediately that only a few pieces remain on the board, white seems to have a slight advantage over red, and checkmate appears to be only a few well-calculated moves away. While a solitary piano plays music with a vaguely traditional if vexing tenor that will accompany the chess scenes throughout the film (music that is reminiscent of well-known pieces for solo piano by Erik Satie, such as ‘Gymnopédies’), white subtitles further direct the viewer to the significance of the match:
La partida empezó mucho tiempo atrás. Ya ha habido muchas bajas por ambas partes. En el momento en que Esther se incorpora al juego, (p.150) bajo la apariencia de un peón blanco, la situatión es la siguiente: Las rojas resisten con tres piezas: rey, reina y caballo: las blancas atacan con peón, caballo, torre, rey y reina.
[The match has been going on a long while. There have already been many losses on both sides. When Esther joins the game, appearing as a white pawn, the situation is the following: The reds resist with three pieces: king, queen, and knight: the whites attack with a pawn, knight, rook, king, and queen.]
The board is gigantic in size, and is set up in the middle of what appears to be the flat roof of a single-story, rectangular building overlooking the sea. A white fence surrounds the perimeter of the rooftop. Positioned against the sea, whose shoreline currents are in a state of perpetual but subtle agitation, the match seems to immediately take on a greater meaning, conjuring up in the mind the way that some cultures have throughout history imagined human struggles to be the result of dice rolls that are beyond our control. Shade—from a tree that is visible on the left and also from the two-story building from which the scene is presumably being shot—covers the bottom half of the railing around the rooftop and lends the scene a chiaroscuro effect, the presence of both light and dark reflecting the dualistic premise of the chess game as well as the human struggle with the beyond. Not a single human figure is present, and throughout the film the pieces will appear to move on their own. Finally, a single white bench sits at the far left border of the rooftop in the shade, while its counterpart sits on the far right in the strong sunlight. Both are unoccupied, and effect a curious reminder of the absence of humankind.
Whereas the first scene introducing the chessboard is filmed entirely as a general shot, establishing its physical location and context and providing a general overview of the current status of the game, CB#2 thrusts us immediately into a close-up of Esther, now rendered as the white pawn. The transition from the previous interview sequence with Esther provides a graphic bridge of sorts, allowing the reader to recognize her facial features and glasses in the papier-mâché likeness on the top of the pawn, anthropomorphizing the chess piece without giving it legs or arms. This tactic, while it perhaps has a commonsense logic (legs and arms would seem a bit strange on chess pieces), also does service to the fact that here we are dealing with neurological disorders, focusing also on thoughts, emotions, and vision rather than issues of mobility strictly speaking. The accompanying stylized Satie-esque piano music works with this face-only (p.151) representation to give the chess scenes a certain cognitive slant. The mood created is a somber one. Esther the white pawn turns deliberately to her right to face off with the red queen, who bears a face that we don't yet recognize, and turns toward Esther simultaneously. As if in a ballet of sorts, the movements of the pieces are important—their parallel turns evoke a certain sympathy between the two pieces. We come to find out through subsequent interviews that the red queen's human complement is a woman who has a blindness that affects the left side of her visual field.20 Interestingly, she moves toward the end of the board, staking out a position that puts the white knight in jeopardy. The prominent reciprocal eyeline matches between these two chess pieces (and those that occur in many of the CB scenes) as well as the shift from a general shot in CB#1 to a series of close-ups and mid to long shots of the pieces help to ground the viewer in the specific relationships between the pieces—and of course the eyeline matches also highlight the importance of visuality for the film and for the protagonists.
In the third chess sequence we are introduced to a number of novel variables. First, while the largely still camera in the first two chess sequences only began to move toward the end of CB#2, here the camera begins to move almost immediately. Although CB#3 begins with another general shot of the board, it quickly shifts to a slow zoom as Esther the white pawn advances toward a point at the camera's right. This zoom is made more complex as it is combined with a pan and a slight travel of the camera upward to capture her almost from above as she takes her new position at the side of the red king. There is a cut to a towering high-angle shot from above the red king, dwarfing Esther the white pawn in the process and characterizing their relationship as definitively unequal. A drastic shift to a low-angle shot with the red king looming over Esther occurs, and a subsequent cut frames only the red king in a slow zoom as we gain the first chance to see his menacing face. In contrast to every other chess piece on the board, the red king is a terrifying figure, his face lacking a nose and mouth or any other human features save two deep, empty, and haunting eye sockets. The relationship between Esther and the red king is, in fact, the most important of the match. As the chess game plays out over the remaining scenes, Esther will ultimately make it across the board, become a queen and defeat the red king, thus ending the game and bringing the chess metaphor to a close in the final scene of Jordà's film.
In CB#4 Esther's white pawn interacts with the white queen, with whom she exchanges a glance. The latter chess piece bears the face (p.152) of another supporting character in the film: the unnamed lady with a canine companion. The nature of this character's visual disturbance, like that of the red queen, does not seem to be that important of a detail in the plot. Even so, once out of the chess sequence, Esther and this new character interact on a number of occasions. Back on the chessboard in CB#5, Esther advances by the white queen, who then advances by her with the red king in the background. At the end of the scene, Esther is nestled between the two kings and further protected by the white knight (who, in CB#6, is shown to have Joaquín's face) against the red queen's potential attack. In CB#6 Esther continues to move forward (just as she continues to progress in the documentary), here captured by the camera in a semi-circular traveling whose dynamic movement suggests that her interior life (motivations, aspirations, fortitude) is gaining confidence and strengthening over time. CB#7 reveals that Esther's pawn is now a mere two squares away from the opposite edge of the board, thus about to turn into a queen. There is a complex strategy playing out among the various chess pieces where Esther is protecting the white king, the white queen is shifting over to protect them both from the red queen and so on. It is as if all of the white pieces are collaborating to allow Esther to become the second white queen.21
In CB#8, the red knight's face is clearly seen to be that of the minor character with ‘pure alexia’ named Paquita. In CB# 9, alternating close-ups of both Joaquín (the white knight) and Paquita (the red knight) build tension as a way of indicating that he is about to knock her off the board, which comes to pass (1:26:31). Esther's pawn turns as if to acknowledge Joaquin's good deed and he looks at her before returning to his previous spot. Just then, the red king turns to stare at her, perhaps a moment of fear experienced by Esther, who in the next filmed scene will take her exams. Finally in CB#10, after having taken (and presumably passed) her exams, she advances and becomes another white queen. The red queen pulls up beside her, but it is too late. We soon see Esther moving into her new place with her boyfriend, David (portrayed as the white king in CB#11). In CB#12, she knocks over the red queen, and turns her attention to the menacing countenance of the red king.
The question of what this red king represents is one that is, perhaps, open to interpretation. Nevertheless, its non-human qualities together with the overarching context of the almost mythological space created by the location and filming of the chessboard suggest that it is not a person but rather some kind of intangible emotion or obstacle. One possible explanation for the red king's presence relates to something (p.153) we learn early on in the film (also in the article by Méndez): the fact that Esther cannot recognize the face of her own father. In light of this detail, the blurry and fearful visage of the red king symbolizes the way her formerly familiar visual world has been distorted on account of her agnosia. It is not that she cannot see at all—after all she can see colors, we are informed—but rather that sight has ceased to be clean, orderly, and reliable. It is now a reminder of the visual uncertainty in which she must live on a daily basis. Another explanation—one that does not vitiate the former—is that the red king represents any and all obstacles to Esther's creating a successful life for herself on her own terms, and undetermined by her visual issues. She does, of course, finally defeat the red king, placing him in checkmate (in CB#12). Her triumphant defeat of the red king coincides in the documentary's narrative with numerous personal successes: taking and presumably passing her exams, success in her job, successfully moving into an apartment with her boyfriend, and having given hope to other minor characters in the film (Elvira, Paquita, perhaps even Joaquín).
As we see the chessboard for one last time during the credit sequence at the end of the film (CB#13, 1:53:02–1:54:08), there are no longer any pieces on the board. The entire rooftop is devoid of shadows of any kind, and a calm sunlight warms the scene. As in the beginning, there is a general shot taken with a still camera. Once again the viewer's attention easily drifts to the ocean, its waves gently coming into the coast. The chess metaphor stands as an enduring visual legacy, a way of paying tribute both to the struggles faced by Esther Chumillas and also to her accomplishments. Significantly, although the chess game is throughout presented in a parallel diegetic space—as a way of introducing new characters and even transitioning back into the documentary's action22—there are numerous ways in which it visually echoes even through the non-chess-themed scenes of the film. For example, in a scene filmed in Cuenca, the floor of a hotel in which Joaquín delivers his outline of alexia is comprised of alternating white and black squares. Similarly, the stone pattern that forms the sidewalk upon which Esther walks in her native Cuenca also suggests a chessboard (this is most visible from 21:04 to 21:19, but also on other streets in the city, e.g. 23:18–23:30, 24:45–24:50). It is thus quite short-sighted to say, as one critic has, that the chess game is one of the film's flaws. The author of blogs&docs sees the chess metaphor as one of the film's ‘varios aspectos fallidos’ [various unsuccessful aspects]:
Por ejemplo, la metáfora del ajedrez: un tablero gigante y unas fichas con rostros esculpidos actúan a modo de separadores de los diferentes (p.154) fragmentos documentales a lo largo del film. Lo que en un principio parece una buena idea que aporta un vuelo poético refrescante, acaba resultando redundante, torpe, efectista. Y esas caras tan torpemente esculpidas… (‘Más allá’)
[For example, the chess game metaphor: a gigantic board and some pieces with sculpted faces function as a way of separating the various documentary fragments throughout the film. What at first seems to be a good idea that lends a refreshing and poetic touch [to the film], ends up being redundant, awkward, overdramatic. And those faces, which are so unconvincingly sculpted…]
Whether in the parallel papier-mâché sequences or in Cuenca's visual space, the pattern of the chessboard suggests the importance of intentional, deliberate movements, and of reflexive thought. Through patience, mental fortitude, and deliberate action—along with a supporting cast of characters, as dramatized in the chessboard scenes—Esther has in a sense triumphed over the threat that her visual agnosia originally posed to her at the age of 13. Jordà's understudied documentary is thus at once a biographical portrait of Esther Chumillas, a personal (autobiographical) meditation, and also a documentary film intent to foreground the connection between the struggles faced by its disabled protagonists and those we all face.
(1) While the book Collection de l'Art Brut Lausanne (2001) by Michel Thévoz does not include a section on Scott's work, it is a good introduction to the movement's origins and conceptual framework, and splendidly details some of the many artists whose work is included in the Lausanne collection.
(3) An important interview sequence from ¿Qué tienes…? focuses on visiting CGAC artist Sylvia Seventy as an influence on Scott's work. MacGregor also mentions this influence and goes further by exploring Scott's relationship with another CGAC visiting artist Richard Elliott (114), something that is not explored in the film.
(4) MacGregor points out that ‘Since participation usually involves five full days per week of non-stop creative activity, only those individuals displaying an intense commitment to image-making are encouraged to become permanent members of the Center. Only when she discovered fiber and began to construct three-dimensional forms, did her interest intensify to an obsessional degree, after which she strenuously resisted all attempts to involve her with other media’ (6).
(5) Artists covered in Barrera and Peñafiel's documentary include Donald Mitchell, Dan Miller a.k.a. ‘Danny,’ and an unnamed artist who documents a fictitious place called ‘chocolate city’ (where people who do not like chocolate or music are not allowed) (see creativegrowth.org/gallery for more information on Mitchell and Miller).
(6) See, for example, Davis's Enforcing Normalcy (1995), McRuer's Crip Theory (2006), Sedgwick's Touching Feeling (2002), and Carlson's article in Hypatia (2001).
(7) Such is the model articulated by Kittay.
(8) This essay appeared first in Public Culture (2001). See also Kittay with Jennings and Wasunna.
(9) Perhaps because of this title decision by the filmmakers, this nickname has stuck in the Spanish press (see ‘La mujer araña’ [The Spider Woman], Luzán). MacGregor contributes to the idea of Scott as a spider in his earlier book.
(10) A short film by Julio Medem focusing on Alicia's invisible friend ‘Clecla’ also appears on the DVD.
(11) Complementing the focus on Scott's own artist persona, the film significantly incorporates the artistic identities and processes of other people with intellectual disabilities doing work at the CGAC and covers the opening of their artistic work at the Center's art gallery. Significant in this regard is that during the film's 37th minute—at the mid-way point of the film's approximately 75-minute narrative and therefore occupying an intentionally privileged position—we see the opening of work by Donald Mitchell.
(12) Compare this with such works as MacGregor's Metamorphosis: The Fiber Art of Judith Scott and the film Outsider: The Life and Art of Judith Scott (Betsy Bayha, release pending)—which ‘delves deeply into the life of a compelling, eccentric and talented individual who has survived in the face of daunting odds’ (www.judithscottdocumentary.org/about.htm).
(13) As MacGregor's book reveals, one of Scott's sculptures consists solely of numerous paper towels wrapped together around and through each other (111). This image was, in fact, chosen as the cover art for his book (also plate 33 on pages 112–13).
(14) This is evident early on in the film when Joyce reads aloud from some of Judy's institutional records which state that ‘she is reluctant to talk and is not too cooperative.’ As stated above, although Judy was deaf (a fact which goes unnoticed in her records for some twenty years), Joyce reads for us how Judy was misdiagnosed on account of her non-response to the command ‘point to the red circle,’ even though she was not able to hear the instructions. The camera works to capture the documents in close-up in order to visually emphasize the inadequacy of such a clinical paradigm.
(15) Christof Koch writes that ‘Pure agnosia, a relatively rare condition, is defined as a failure of recognition that cannot be attributed to elementary sensory defects (e.g. retinal deficits), mental or linguistic deterioration, or attentional disturbances. It is often limited to one sensory modality. Typically a visual agnosia patient can't recognize a set of keys on a chain dangling in front of her. If she grasps them or if they are jingled, she immediately knows what they are’ (217, original emphasis; see also Koch 217–20). On the other hand, ‘The characteristic features of pure alexia include very slow but on the whole accurate reading and massive effects of word length on performance’ (Arguin (p.156) and Bub 149). The very limited amount of press on the documentary and the complete absence of critical essays devoted to the film specifically and to Jordà means that there are very few attempts to flesh out the film's presentation of agnosia or alexia. One critic mentions only that agnosia is ‘una disfunción cerebral que impide relacionar los objetos que ven sus ojos con las palabras que usamos todos para designarlos’ (Torreiro, ‘El emotivo’).
(16) The last film mentioned, De niños, received much attention as it touched upon a case of pederasty in the Barcelona neighborhood of El Raval in 1997—specifically how this case was manipulated in the media to achieve aims of urbanistic remodeling. See the interview of Jordà by Anuschka Seifert and Adriana Castillo, ‘Murmurar es desaprobar.’
(17) This may indicate a specific subcategory of agnosia, noted by Christoph Koch, in which the patient has the inability to perceive color (Koch 219; see also 137–38 on achromatopsia).
(18) In praising Esther, of course, he also places himself with her in an in-group, explaining that Esther was studying, she stopped but now she is studying again and about to graduate… and that similarly he used to make films, he stopped and now he is doing it again.
(19) ‘For instance, writing in only 1972, Bender and Feldman claimed that visual agnosia did not exist, independent of problems in basic perceptual functions on in general cognitive function. Today [this was written in 1994], the case for the existence of visual agnosia as a clinical phenomenon is more secure. There exist several good single-case and group studies of patients with selective problems in particular perceptual processes mediating visual object recognition, which cannot be attributed to impaired basic perceptual or general cognitive functions’ (Humphreys et al. 63). Esther's case is perhaps interesting to the authors of these sorts of studies—and its presentation in Jordà's documentary is potentially of interest to a wider viewing public (English subtitles are included on the DVD).
(20) The white rook also turns toward Esther in CB#2, but I was not able to identify who he was. While I want to say it is a supportive figure such as Esther's father, it may actually belong to a person whose story didn't make it into the final edited version of the documentary put together by Núria Esquerra, for whatever reason.
(21) A seemingly offhand comment by Joaquín in the documentary suggests to this viewer that the decision to create a parallel chessboard universe where Esther travels across the board to become a queen might have evolved along with the documentary itself, instead of being a decision made in post-production. Joaquín, helping her out of a car, says ‘bájate, reina’ [Step down, o queen].
(22) One poignant example of this occurs at 1:17:30, where the chess scene closes with a semi-subjective shot of the white queen (inflected with a slow zoom) as she ‘stares’ out at the ocean. The camera zooms past the chess piece, soon showing only the ocean and its movement. The next scene we see is of the human counterpart of the white queen (the lady with the seeing-eye dog) staring our at a river. The graphic relation between the shot of the ocean and the shot of the river parallels the thematic relation between two scenes that foreground protagonists alone, meditating on the more philosophical aspects of experience.