In the introduction that launches his landmark 1997 reader on the subject, Lennard J. Davis notably frames Disability Studies as a political project, embracing an approach that envisions the field as at once ‘an academic field of inquiry and an area of political inquiry’ (‘Introduction’ 1). In my view, this is yet another way of embracing the critical aim of cultural studies as described by one of the eclectic (and still forming) discipline's founders, Raymond Williams. In 1986, Williams retrospectively summed up the premise of cultural studies as ‘the refusal to give priority to either the project or the formation—or, in older terms, the art or the society’ (152). In other words, the critic needs to grapple at once with the discourse of art (formal aspects, content, style, tone…) and also with the context in which a given work of art is produced (social, cultural, economic, political…)—while attempting to give equal weight to each. In this study, this means attending not merely to issues regarding the cultural representations of disability—which are, of course, already political—but also to research foregrounding the real-world circumstances in which disabled people find themselves as they strive to find love and engage in meaningful work.
Rather than attempting an exhaustive treatment of the representation of disability in Spanish cultural products, this book is an attempt to bring a Disability Studies perspective to bear on selected Spanish materials as diverse as fiction films, documentaries, novels, and even the sequential art of the graphic novel/comic. While this book is undoubtedly a piece of humanities scholarship, it nonetheless establishes a selective dialogue with existing research on disability from a wide spectrum of approaches (philosophical, historical, social). Its (p.x) central focus, however, is the analysis of representations of disability in recent Spanish cultural products. In every case save one (the 1981 novel Angelicomio, in chapter 3), those cultural texts selected fall in the date range of 2004–11. It is important to point out that there is undeniably a social bias—both inside of Spain and elsewhere—that ends in the funding and mass-marketing of literary and filmic projects developed by physically and cognitively abled artists, to the detriment of disabled artists and producers. I do not defend this situation. I do believe, however, that if we want to understand, appreciate—and in some cases, perhaps even change—the kinds of images of disability that are routinely consumed by the able-bodied majority of contemporary societies, these projects must be discussed in depth and analyzed critically. This is intended not as a substitute for social science approaches to disability, but rather as a complement to such perspectives. While the cultural products analyzed throughout this book are of interest for their representations of people with disabilities, in the concise epilogue that concludes the book I turn to a 2011 exhibition of paintings, as well as comics, short stories, and poems, all produced by people with disabilities themselves.
Disability Studies at a Glance
This book has been conceived and written as a way of introducing general readers interested in the analysis of film, novels, comics, and other cultural products to a field with which they may not be very familiar. This being the case—and at the risk of repeating information with which specialists in Disability Studies are undoubtedly well versed—it is important to sketch out the general dimensions of this interdisciplinary field. Perhaps like many still-evolving and necessarily interdisciplinary academic fields, Disability Studies is the meeting place for number of scholarly concerns. These include 1) practical emphases on the education and social integration of people with disabilities; 2) more theoretical, philosophical, and aesthetic engagements with disability itself; and 3) of course, cultural issues implicated in the representation and ultimately even self-representation of people with disabilities—all of which will be discussed in this book. The general English-language reader will be, perhaps, more familiar with the first of these concerns given the high international visibility of such badly needed social reforms as the Americans with Disabilities Act of 1990 (ADA) and the disability rights movements that engendered it (see Carlson, Faces; also Carey, chapters 7–9). Even so, she or he may not (p.xi) be familiar with the nature of various disabilities themselves, nor with the reality that the struggle to secure full social rights for people with disabilities continues (Pardeck). At the risk of stating the obvious, it is important to point out that—contrary to what some may unfortunately believe—contemporary disability legislation has not, in one single blow, solved the social problems faced by people with disabilities nor has it even managed to effect lasting and satisfactory change.
It is also important to recognize the heterogeneity of the group commonly referred to as ‘people with disabilities.’ In reality, this label groups together people with greatly different needs and circumstances. For this reason it can be difficult to generalize regarding both the problems faced by the various populations with disabilities and also their potential solutions. Making such generalized discussions more difficult is the heterogeneity that characterizes even more specifically defined populations of people with disabilities (e.g. people with Down syndrome, people with autism). Just as the nature and severity of a disability can vary greatly, so too can individual circumstances and needs, which may in turn be informed by individual, familial, and regional variables, as well as degrees of access to existing institutions.
Whether in Spain or elsewhere, there is one trend in the approach to disability that speaks at once to the diversity of the existing academic subfields and also to the cultural geographies and life circumstances particular to a wide range of populations with disabilities. That trend involves the replacement of a medical paradigm of disability with a social one. A great deal of recent scholarship in Disability Studies speaks to a paradigm shift in the way we think of disabilities, which are no longer to be viewed as a purely medical issue (see Brosco). It is perhaps true that some degree or another of medical treatment may be necessary in certain cases in order to ensure that a given person with a disability can lead a relatively autonomous life—to give one example, the discussion of the autobiographical novel Quieto in chapter 3, about a father's shared life with his severely and multiply disabled son, advances a much more ambivalent perspective on medicine than other cultural products treated in this book. Nevertheless, the social paradigm of disability in many ways constitutes the foundation of the field of Disability Studies. This paradigm represents a staunch refusal to view people with disabilities through medicalizing discourses that frame disability as deviation or abnormality. In addition, the prevalent view that the able-bodied majority do not themselves pass through periods of dependency is mistaken, as will be discussed further in chapter 4.
(p.xii) Taking the first step toward understanding the social dynamics surrounding disability means recognizing that interdependency is the rule of human societies. We are all dependent on others: for food, clothing, and medical care; for support networks, social opportunities, and more. The issue is that, historically, people with disabilities have had to grapple with an able-bodied majority whose institutions, attitudes, and beliefs concertedly frame disability as a problem. The consequences of this entrenched viewpoint have been legion, leading to marginalization, neglect, medicalization, and even direct violence against populations with disabilities. As feminist/Disability Studies philosopher Licia Carlson succinctly reports in her book The Faces of Intellectual Disability: Philosophical Reflections (2010):
Historically, disability has been defined according to the medical model—viewed as a particular trait in the individual departing from what might be called normal species functioning. As many disability theorists point out, this model has been responsible for numerous beliefs and practices surrounding disability and the disabled. The view that disability is objectively abnormal and thus undesirable gives rise to a related constellation of assumptions that have been termed the ‘personal tragedy model’: that disability is objectively bad, and thus something to be pitied, a personal tragedy for both the individual and her family, something to be prevented and, if possible, cured. That notion that disability constitutes a blemish on the rosy face of medical science and societal well-being explains many of the practices associated with it, ranging from involuntary sterilization, institutionalization, and forced rehabilitation to social marginalization, euthanasia, and ‘mercy killing.’ (Faces 5, original emphasis; see also Carlson and Kittay)
In a similar fashion, scholar Harlan Lane points to what he calls the ‘mask of benevolence’ as a metaphor for what the medical paradigm of disability has routinely accomplished—the institutionalized oppression of people with disabilities under the guise of a helping hand, purporting merely reaching out to those in need. The preference for a ‘social model’ thus privileges the notion that ‘disability’ is a relational term (Carlson, Faces 5). That is, disability is not an objectively existing difference, but one that is constructed in relation to a given cultural environment and necessarily negotiated socially. By and large, Disability Studies scholars employ the social model in order to unmask the ways in which disability has been constructed within the popular imagination as necessarily standing in opposition to such equally created (and socially negotiated) notions as ‘normalcy’ and (p.xiii) ‘able-bodiedness’—notions that are routinely taken for granted and that, moreover, are perniciously unmarked categories (see Carlson, ‘Cognitive Ableism’; Davis, Enforcing Normalcy).
Even outside of Spain there have been relatively few academic treatments linking disability and cultural production, specifically—even if their number has been steadily increasing over the last decade or so. Although this book dialogues throughout—explicitly and implicitly—with this wider tradition of socio-cultural studies of disability, here I will give just a small handful of examples. Disability Studies pioneers David T. Mitchell and Sharon L. Snyder begin their essential co-authored book Narrative Prosthesis: Disability and the Dependencies of Discourse (2000) with a preface that speaks to the way academic scholarship on disability grew out of work on other marginalized subjectivities (esp. ix–xiv) and an introduction that contextualizes their book as an attempt to ‘locate disability's place on the map of multicultural studies’ (2) by focusing on narrative art. Similarly, Tobin Siebers—as the author of The Subject and Other Subjects and also the editor of The Body Aesthetic: From Fine Art to Bodily Modification—has produced a corpus of work focused on issues of subjectivity and the body that he has recently brought to bear on disability (Disability Theory, published in 2008) and on disability and art explicitly (in his Disability Aesthetics, published in 2010). The central premise of this most recent work is that ‘disability has a rich but hidden role in the history of art’ (Siebers, Disability Aesthetics 4), and its author appropriately asks how treating this history more deliberately might change the way we view artistic production in general.
Apart from such pertinent and pointedly social and cultural analyses, many more titles in Disability Studies grapple with philosophical or otherwise theoretical questions relevant to the growing discipline. This is the case with Carlson's book, which maintains that ‘philosophical questions that emerge in connection with intellectual disability are matters that not only are worthy of scholarly interest but speak to the deepest problems of exclusion, oppression and dehumanization’ (Faces 3). Carlson has also published a volume, co-edited with Eva Feder Kittay, titled Cognitive Disability and its Challenge to Moral Philosophy (2010) in which 22 essays are organized around the examination of such themes as ‘The Medical Model,’ ‘Justice,’ ‘Care,’ ‘Agency,’ ‘Speaking about Cognitive Disability,’ and ‘Personhood.’3 Similarly, as the author of such works as Enforcing Normalcy and Bending Over Backwards, the aforementioned scholar Lennard J. Davis has attempted to frame disability as ‘the missing term in the race, class, gender triad’ (Enforcing Normalcy, 1), mobilizing work on corporeality and forcing a confrontation with the framework of disability.
(p.xiv) In fact, many Disability Studies scholars in the Anglophone world, while they may deal with disability specifically, see it as an important part of their work to draw connections between the interests of their primary field and the struggles of other marginalized subjectivities. Relatively new book series such as those from the University of Michigan Press (‘Corporealities: Discourses of Disability,’ edited by Mitchell and Snyder), Manchester University Press (‘Disability History,’ edited by Julie Anderson and Walter Shalick) and Liverpool University Press (‘Representations: Health, Disability, Culture and Society,’ edited by Stuart Murray) have been created specifically to address this lacuna in academic (cultural) treatments of disability—although to date none of the above has published a book devoted to Spanish issues or cultural production in Spain. Significantly, the aforementioned contributions have yet even to broach the subject of the wider Spanish-speaking world in any semblance of depth.
To my knowledge—although there have been a number of isolated essays published within the small subfield of Hispanic Disability Studies (e.g. those written by Madeline Conway, Encarnación Juárez-Almendros, Matthew Marr, Julie Minich, Ryan Prout, and Victoria Rivera-Cordero, as well as my own essays)—there has not yet appeared a book in English on disability in Spanish cultural production. To my mind, the only books devoted to disability in Hispanic cultural production at all are Susan Antebi's monographic work Carnal Inscriptions (2009), which focuses exclusively on Latin America, and my own edited/translated collection Deaf History and Culture in Spain (2009)—the latter inspired by Susan Plann's even more compelling (but historically focused) work A Silent Minority: Deaf Education in Spain 1550–1835. To put it simply: the book you are reading is the first of its kind. It bears repeating that this is not an exhaustive or encyclopedic work—there are thus many Spanish cultural products that focus on disabilities that have not been taken into account here. I have avoided certain films and books that have either already received some degree of scholarly attention or whose treatment of disability simply did not meet the needs of this volume. In the former category there are widely screened films such as Mar adentro (2004, dir. Alejandro Amenábar), Carne trémula (1997), dir. Pedro Almodóvar), Acción Mutante (1993, dir. Álex de la Iglesia) and Jardín de las delicias (1970, dir. Carlos Saura); while such nonetheless interesting works as 1% esquizofrenia (2007, dirs. Ione Hernández and Julio Medem), Piedras (2002, dir. Ramón Salazar), Desde mis ruedas (2002) by Asun Balzola, Soy Julia (2001) by Antonio Martínez, Mary Ann (1985) by Fernando Márquez and Los renglones torcidos de Dios (1979) by Torcuato Luca de Tena fall under the (p.xv) latter classification. I strongly encourage scholars seeking to interrogate representions of disability in Spanish literature and film to turn to these works as well as new works that are being published each year. Disability in Spanish cultural production—just as in Latin American cultural production—continues to be an almost completely unexplored area of academic research. Even works published in Spain on disability and culture tend to avoid a serious and sustained discussion of Spanish cultural products.4
Moreover, as the reader will note, this work is envisioned as a corrective to the path taken by what few sources on disability and Spanish culture exist. While it seems to be more common—both within and outside of Hispanic Studies—for scholars to discuss physical disability alone, this work is an attempt to give more attention to disabilities that are intellectual (developmental, cognitive, neurological) in particular. While research into the cultural representation of physical disability is no less important, this book's chapters focus overwhelmingly on Down syndrome, autism, agnosia/alexia, and cerebral palsy (although physical disabilities are also discussed briefly, for example in chapter 3's look at the novel Angelicomio). Such intellectual disabilities have not always been a part of the public discourse on disability, generally (internationally) speaking, and they have been overshadowed by physical disabilities in Spanish culture, specifically. It is not a requirement that this book's reader should have extensive knowledge of Spain or of Spanish culture. In order to give the reader a basis for understanding the state of representations of disability in Spain, the next section provides a concise overview of Spain's recent history with an emphasis on the flowering of disability organizations within the country's post-dictatorial context. This section begins by noting the recent global turn within the wider field of Disability Studies and ends by discussing a few high-profile, visual points of reference for understanding the current state of awareness of intellectual disabilities among the Spanish people.
Spain and the Global Turn within Disability Studies
Disability Studies is now entering a new, international phase. In 2010, the premier journal in the discipline—the Journal of Literary and Cultural Disability Studies—featured two special issues expressing an explicit commitment to the goal of pursuing a global or transnational vision for the field. In special issue 4.3, titled ‘Disabling Postcolonialism,’ editors Stuart Murray and Clare Barker provided an (p.xvi) important forum for discussions of disability and power in a range of contexts (Indian-American, Pacific Nuclearism, Canadian-Kenyan, Luso-African, Ghanaian, and Nigerian). In addition, in special issue 4.2 of that journal, editors David Mitchell and Sharon Snyder included five essays and an introduction grouped around the theme of ‘The Geo-Politics of Disability.’ Therein, the editors stress the concept of ‘ablenationalism’ as a way of potentially mapping the social dynamics of (dis)ability to concrete cultural realities in diverse national contexts. They write that:
One result of this effort is the ability to begin undertaking necessary comparisons and contrasts between people with disabilities around the globe. This is not in order to draw up universalizing conclusions about duplicative states of social rejection (the forms of social rejection experienced by people with disabilities are often quite unique), but rather to gain an understanding of the nuances of ablenationalism's tactics on a global scale. (114)
These are important and timely contributions to the recent global turn in Disability Studies. There is clearly a great need for studies that look at what is ‘unique’—to use Mitchell and Snyder's term—about the cultural practices surrounding disability in Spain. For reasons having to do with the field of Hispanic Studies—my home discipline and the area from which I have recently moved into Disability Studies—I am not interested here, however, in arguing for the uniqueness or exceptionality of Spanish discourses on disability.
Instead, in the chapters that follow, I show how current Anglophone models of humanities disability scholarship are applicable to the Spanish context. I intend this to be part of a first wave of Hispanic Disability Studies. There may certainly be disadvantages to this approach. It is likely that these disadvantages may be more easily perceived by existing Disability Studies scholars working in social science fields or departments of English rather than in departments of Hispanic Studies, a field that has been somewhat slow to take an interest in disability. Nonetheless, I hope that this book will interest two divergent groups of researchers—those in Hispanic Studies already working on issues of corporeality, the body, and identity formation as well as Disability Studies scholars who routinely engage in close readings of cultural texts (films, novels, comic) in contexts outside of Spain.
Here, there is reason to assert the reality that Spanish films and literature are, of course, composed, produced, and marketed in an international context. My book is most attentive to this fact in (p.xvii) chapter 4, which looks at a documentary film with Spanish directors and producers that was filmed in the United States (in English), focusing on an internationally known American fiber artist named Judith Scott. This international perspective, of course, is relevant to other chapters as well. Chapter 1's discussion of the representation of disability in two recent Spanish films follows logically from the fact that—internationally speaking—there have been far too few films in which characters with disabilities have actually been played on screen by actors with disabilities. Moreover, in chapter 2 the published autobiographical reflections (in English) of prominent writer and US university professor Temple Grandin, who has autism, are quite relevant to a Spanish graphic artist's portrayal of the life he shares with his daughter, who like Grandin also has autism. My hope is that my incorporation of Grandin's own work and story serve as a reference for readers familiar with Anglophone work in Disability Studies. Similarly, the medium of the comic/graphic novel is certainly one in which American culture, specifically, has had an enormous influence on graphic traditions in other countries, Spain in particular (see García). In addition, while chapter 3 looks at two books devoted to the topic of children with disabilities written and published in the Spanish context, it is short-sighted not to acknowledge that there is a growing, international selection of autobiographical books on that topic that are increasingly marketed to parents of children with disabilities—a publishing market for memoirs that is not without its own problems (see Piepmeier).
As a way of contextualizing the cultural analyses that follow, of course, it is nonetheless appropriate to reflect briefly on the Spanish context. Throughout much of the twentieth century, the Spanish people lived under the dictatorship of Francisco Franco (1939–75), which followed the Spanish Civil War of 1936–39. With Spain's post-1975 transition to democracy—and the Spanish Constitution of 1978—the country entered a period of ‘staggering’ changes: the fundamental change from dictatorship to parliamentary democracy, the adoption of a new constitution and reforms of statutes and administrative codes, the influx of younger generations into politics and trade unions, and many economic and social changes (Montero 315). Culturally speaking, democracy proved—unsurprisingly, of course—to be a much more tolerant environment for populations that had suffered marginalization and exclusion (if not worse) under the officially Catholic and undoubtedly machista Spanish society of Francoism. In the decade following the transition (the 1980s), identities of gender and sexuality that were excluded by Franco's (p.xviii) normativizing and patriarchal state—women, gays, and lesbians, for example—were celebrated, perhaps most famously in the films of internationally known director Pedro Almodóvar. With censorship officially done away with, the production of cinematic as well as literary and musical works increased notably. Spain's legacy of the cine social (social cinema) developed in the 1990s, in particular, favors the representation of ‘present-day social problems (crime, drugs, domestic violence against women and children)’ and brings ‘Spanish cinema closer to European (and thus exportable) cinema,’ as scholar Núria Triana-Toribio explains in her book Spanish National Cinema (156–57). Linguistically, those languages that had been officially outlawed by the Franco dictatorship—such as Catalan, Basque, and Gallician—experienced a resurgence, as publishing industries in those languages started up again. Politically, the socialist and communist strains of Spanish society that had flourished during Spain's Second Republic (1931–36) were reintroduced into a democratic state that officially embraced pluralism, even if old antipathies continued to linger for many years after Franco's death on 20 November 1975.
Although this book is not a historical treatment of disability in Spain, it is worth noting in passing that the dramatic social, political, and cultural shifts toward pluralism mentioned above have necessarily influenced the lives of disabled populations to some degree. By far the most powerful contemporary disability organization in Spain is one that is dedicated to a physical disability and that formed during the Franco dictatorship. The Organización Nacional de Ciegos Españoles (the Spanish National Organization of the Blind), or ONCE as it is popularly known—discussed at greater length in chapter 3—was formed shortly after the Spanish Civil War as a way of supporting the country's wounded. Nevertheless, over the years it has come to function as a sort of umbrella-organization for the needs and rights of other physically disabled populations. Even more important still, the transition to democracy has seen a notable increase in a range of other advocacy organizations tailored to the needs of specific groups of people with disabilities. As Spain's capital, Madrid is understandably home to the headquarters of many such organizations, which include, for example: ADISLI (the Asociación para la Atención de Personas con Discapacidad Intelectual Ligera e Inteligencia Limitada [Association for the Attention of People with Mild Intellectual Disabilities]), FEAPS (Federación de Organizaciones en favor de Personas con Discapacidad Intelectual [Federation of Organizations Supporting People with Intellectual Disabilities]), the Asociaciòn para el Empleo y la Formación de Personas con Disacapacidad [Association (p.xix) for the Employment and Education of People with Disability], CERMI (Comité Español de Representantes de Personas con Discapacidad [Spanish Committee Representing People with Disabilities]), COCEMFE (Confederación Coordinadora Estatal de Minusválidos Físicos de España [State Confederation Coordinating the Physically Handicapped in Spain]), CNSE (Confederación Nacional de Sordos de España [Spanish National Confederation of the Deaf]), and many more.1 Moreover, the fact that the Spanish state comprises 17 autonomous communities and two autonomous cities and that several regions in particular boast their own state-recognized linguistic minority groups (speakers of Catalan, Basque, and Gallician in particular) assures the existence of a largely de-centralized approach to disability advocacy, with each region having created its own associations and organizations. The recent video Discapacidades humanas [Human Disabilities] (2010), produced by the Fundación ONCE in collaboration with Productora FARO, estimates that 9 million Spanish people have some form of disability (DVD 1: “Presentación” 4:59), and—given its extensive interviews with a variety of people with disabilities and its pedagogical aims—it is a great place for some readers to start learning about the numerous Spanish organizations dedicated to people with varying disabilities.
A brief look at the recent highly publicized documentary titled Capacitados [Capacitated People] (2010)—promoted by Spain's ONCE organization on both Spanish television and on the web—provides an informative look at how far Spanish society has come since Franco's death, but it also points to the limitations of the current public discourse on disability in Spain. The strength of this video by a high-profile disability advocacy group is that it shows how even nonacademic, contemporary treatments of disability intended for large Spanish audiences are highly conscious of the opposition between the notions of ‘able-bodied’ and ‘disabled’ and more specifically of the central tenet of Disability Studies that disability resides not in the body of the individual but instead in the (social) environment. On the other hand, it must be stated from the outset that, perhaps because the documentary has clearly been made with the intention of reaching the widest possible viewing public, Capacitados thus risks a rather un-nuanced presentation of disability—one that necessarily fails to capture the full heterogeneity of Spain's disabled populations, those with intellectual disability, specifically.2 Notwithstanding, even if it might ultimately fall short in this (important) category, the documentary is in a sense a welcome contribution to the public advocacy for populations with disabilities in Spain.
(p.xx) The 28-minute Capacitados seeks to give three prominent and successful able-bodied working professionals the experience of working a full day with a disability—chef Ferran Adrià must work in the kitchen of his restaurant El Bulli (located in Roses, Girona; now closed) ‘con unos auriculares inhibidores de sonido, que le impiden oír por completo’ [wearing sound-inhibiting headphones that prevent him from hearing completely]; Marcos de Quinto, the president of Coca Cola Iberia, spends the day ‘con unas gafas opacas que no le permiten ver en absoluto’ [wearing dark glasses that prevent him from seeing anything whatsoever]; and María Garaña, the president of Microsoft Ibérica, goes to work in her office in a wheelchair (see the booklet accompanying Capacitados, 7). Although Capacitados may not be as nuanced a treatment of disability as some of the cultural products discussed in greater depth in the following chapters, it nonetheless testifies to and dramatizes to great effect the general public's lack of understanding of the day-to-day realities experienced by certain populations with disabilities. After completing her own work experience, Microsoft Ibérica's president Garaña makes a poignant comment that recalls Carlson's characteristic Disability Studies notion of disability itself as a relation: she states that ‘Esta experiencia me ha enseñado que la discapacidad no reside en las personas, sino en el entorno’ [This experience has taught me that disability does not reside in people, but rather in the environment] (Capacitados booklet 9).
Capacitados is, of course, a welcome but not necessarily a unique attempt to educate the Spanish public on matters of disability. One recent 4-minute Spanish television news spot, for example (available also on the internet at YouTube.com as ‘2010 CERMI Madrid Tour Disacapacidad’), notes the inadequacy of city infrastructure for disabled populations in the northern Chamartín district of Madrid; ramps are non-existent or else inadequate, and auditory crosswalk signals are faint or else turned off during certain hours. Similarly—with great relevance for chapter 1 of this book—an extensive campaign has been launched collaboratively by two advocacy groups (both the Obra Social Caja Madrid and Down España) to promote ‘Derechos para las personas con discapacidad intelectual’ [Rights for People with Intellectual Disabilities], resulting in a series of notable television spots. One such 30-second spot (also available on the internet at YouTube.com, see ‘Campaña’) opens with the high-angle general shot from inside an apartment's second-story window depicting two blurry figures loading a moving truck on the street. As a female voiceover intones the words ‘Nunca piensas que va a llegar este momento’ [You never imagine that this moment will come], the viewer sees, in (p.xxi) sequence, a mid-shot of a proud, smiling Spanish mother; next, a close-up of her hand brushing the empty coat hangers in her son's closet; and, finally, a another close-up shot of her picking up a photo of her son clad in ski-gear, his face obscured by ski-goggles. After clutching the photo close to her chest, she spies her son's mobile phone on the dresser and runs down to hand it to him as the voice-over says: ‘Pero ahora sé que tiene que volar solo’ [But now I know that he has to fly solo]. As she steps up to hand the phone to her son and give him a hug, a slow zoom accentuates the effect of the emotional musical sequence and we see that he is a young man with Down syndrome: the voiceover one again comes in to say ‘Y yo voy a estar allí, aportándole’ [And I will be there, supporting him]. A male voice—that of her son—then reads the words subsequently projected on the screen for the reader's benefit, which summarize an article of the recent UN Convention on the rights of people with disabilities: ‘Artículo 19: Derecho a vivir de forma independiente y a ser incluido en la comunidad’ [Article 19: The right to live independently and to be included in the community]. Similar TV spots dramatize other articles of the UN Convention for the Spanish viewing public, such as Article 27, the right to employment (see ‘Campaña ’), and Article 5, the right to equality without discrimination (see ‘Campaña ’).
Such televised spots implicitly point to a growing international awareness of the need to secure rights for people with intellectual disabilities such as Down syndrome and autism, among others. Alison C. Carey's recent work On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America (2009), for example, makes it clear that intellectual disability is ‘a contested social construction, not an objective biological condition. Activists draw on and construct various understandings of disability in their struggles to establish or restrict rights’ (13; see also Carlson, Faces 86–91; Siebers, Disability Theory, chapter 3). As the recent Spanish video project Capacitados shows, however, there is much work to be done in Spain, just as there is elsewhere. Through its choice to foreground three physical disabilities in particular—relating to hearing, vision, and physical mobility—the project fails to discuss intellectual disabilities and in the end marginalizes them further. Spanish journalist Amparo Mendo is perhaps the contributor to the booklet accompanying the Capacitados project who best signals the limitations of this effort by pointing out a single, but incredibly revealing, flaw of the documentary project:
Ahora, sólo un ‘pero’: la discapacidad intelectual está tratada al final, con la aparición del ayudante de dirección, el chico que maneja (p.xxii) la claqueta. A mí me hubiera gustado un poco más un esfuerzo de imaginatión para integrarla con algún personaje que hubiese vivido la experiencia de la discapacidad intelectual. Por todo lo demás, un diez. (43)
[I have only one complaint: intellectual disability is depicted only at the end, with the appearance of the director's assistant, the young man who works the clapperboard. I would have liked to see a greater effort to integrate it (intellectual disability) by way of the inclusion of someone who had to live the experience of intellectual disability. Everything else deserves a ‘10’].
Although she praises Capacitados overall, this drawback is for the commenting journalist a major one since ‘Desafortunadamente, la discapacidad intelectual es la que menos llega a la sociedad’ [Unfortunately, intellectual disability is the least socially visible of all] (43). If this video is any indication, it would seem that Spain—just as do other countries—has much more work to do if people with intellectual disabilities are to be more fully understood and integrated into contemporary society.
The large target audience of both the recent Spanish documentary Capacitados and the televised spots associated with the ‘Rights for People with Intellectual Disabilities’ campaign, to name just two recent and prominent examples, indicates that public awareness of disability in Spain may be reaching a new level. Even so, research that foregrounds the representation of disabled characters in Spanish cultural products—as opposed to social studies focused more directly on rights and educational or social institutions, or even medically oriented studies of disability (which may be largely peripheral if not anathema to scholars embracing the ‘social model’)—is a less-recognized if still growing subfield of Disability Studies taken as a whole. Although it is of great significance that intellectual disabilities such as Down syndrome, autism, and alexia/agnosia are now attaining widespread recognition through recent cultural products in Spain, it is important to underscore that this book is not content to discuss the mere fact of representation. While work that documents the representation of disability as the prioritized content of literary and filmic works is itself a greatly needed aspect of the political project of Disability Studies, this book—throughout—goes beyond mere content alone to analyze the formal aspects of the works looked at from the perspective of the literary/cultural critic. Ultimately it is not merely that disability is represented, but also how it is represented that matters. To once again (p.xxiii) invoke Raymond Williams's definition of cultural studies—although each chapter's discussion of a given work may tend to lean toward one or the other, Disability Studies and Spanish Culture seeks to put both the ‘project [art] and the formation [society]’ on equal footing. Each of the book's chapters thus seeks to blend artistic discourse with the discourse of disability.
The goal of this project as a whole is to give the reader an understanding of the diverse ways in which various disabilities have been represented in specific Spanish cultural products and to explore how these representations themselves either resonate with an explicitly political project of Disability Studies or promote simplistic understandings of disabilities that have been extensively critiqued by a growing body of critical and theoretical work. In this sense, the book constitutes a uniquely Spanish contribution to the extensive debate surrounding the growing field of Disability Studies.
Chapter 1, ‘Filming Down Syndrome,’ blends Disability Studies as a political project with formal analyses of two recent Spanish films that have as their protagonists (multiple) people with developmental disabilities, specifically Down syndrome. Through a detailed analysis of both films and a simultaneous exploration of recent legislation on disabilities in Spain (and throughout Europe: the 2006 UN Convention on Disability, the organization Down España), the case is made for granting more autonomy to people with disabilities. At the same time, certain details of the presentation of the disabled characters in the films are of great theoretical interest, in that they differ in their presentation of the idea held by the more ‘cognitively abled’ member of society that disabled people are ‘childlike’ (Carlson ‘Cognitive Ableism’). It is important to note that the representation of disability that occurs in the first film considered—titled Yo, también (2009)—is particularly path-breaking. Daniel is played by Pablo Pineda who is, in extra-filmic reality, the first European university graduate with Down syndrome.
The second half of the chapter briefly looks back to the film León y Olvido (from 2004) as a point of comparison. The goal is to read both the earlier film's successes and its failures from a Disability Studies perspective against the (in my estimation, somewhat more progressive) model offered by Yo, también. While León y Olvido functions as a well-intentioned corrective to the lack of depictions of disabled characters (and also to the lack of disabled actors) in Spanish films (p.xxiv) more generally, the titular (bordering on incestuous) relationship between siblings León (who has Down syndrome) and Olvido (who must suddenly become León's guardian) is rendered in sensationalistic and over-dramatized terms that ultimately mitigate its significance. Nevertheless, the discussion also foregrounds the film's strong supporting cast of actors/characters with Down syndrome and its treatment of the theme of autonomy, which is subsequently addressed more fully by Yo, también.
‘Envisioning Autism,’ chapter 2, looks at the presentation of a single story across two different cultural products and types of visual media. The first half of the chapter thoroughly engages the graphic novel/comic book María y yo (2007) drawn by well-known Spanish graphic artist Miguel Gallardo. Gallardo—who made a name for himself within the context of the post-dictatorial cultural scene known as the Movida Madrileña during the 1980s—gives the reader a wonderfully complex, entertaining, and even educational, autobiographical look into the life he shares with his autistic daughter, María. The analysis of his comic blends discussion of the heightened notion of visuality for populations with autism (as per the writings of Temple Grandin) with an appreciation of the formal (comic-art) and pedagogical strategies employed by Gallardo in María y yo.
The latter half of this second chapter reads first-time director Félix Fernández de Castro's eponymous cinematic ‘adaptation’ of the comic book (María y yo, 2007) implicitly against Gallardo's original creation as both an extension of the latter and as a complex cultural product in its own right, focusing on each work's representation of disability. Ultimately, I see the film as a less nuanced cultural product that tends toward a medicalized view of autism where the comic book had largely avoided this problematic. In each case—whether in the original comic or in the film's use of comic-book sequences—the hypothesis advanced by Sarah Birge in her essay published in Disability Studies Quarterly rings true: ‘Comics, a relatively understudied medium for representations of disability, have enormous potential for providing important critical perspectives in disability studies [through] depicting cognitive disabilities in the nuanced context of embodied life’ (no pag.; see also Hacking and McGeer).
The third chapter, ‘Narrating Childhood Disability,’ looks at the presentation of children with disabilities in two underappreciated novels from contemporary Spanish literature. The first half of this chapter approaches an almost unknown novel by the Murcian writer Salvador García Jiménez by way of the theoretical paradigm of Disability Studies. Taking into account the definition of the ‘social (p.xxv) model’ of disability signaled by various critics (both in the United States and in Spain), the novel Angelicomio launches a critique of the insufficient institutional and state support available for populations of adolescents with disabilities. Published in 1981—and notwithstanding the fact that its narrative action may be fictional—the novel marks a turning point in the developing awareness of this educational and formative issue, given that 1982 saw the passage of a ‘Law on the Social Integration of the Disabled’ (LISMI, Ley de Integración Social de los Minusválidos). Angelicomio captures in detail the internment and harsh treatment of a group of disabled children at a fictional institution in a rural area of Murcia, from the perspective of the education of children with a range of disabilities. The analysis of this novel synthesizes discussions of novelistic form and content with an eye toward indirectly critiquing educational policies that evolved under the Spanish dictatorship and that lasted through the transition to democracy (1975) to the 1982 implementation of LISMI.
The second half of chapter 3 launches ahead to the 2008 publication of the autobiographical novel Quieto by Màrius Serra, which narrates seven years in the life of his disabled son, Lluís (nicknamed Llullu). From Angelicomio's treatment of multiple children with disabilities, we pass to discussion of a single child with multiple disabilities. Whereas García Jiménez's novel embraced a strongly social model for disability, the novelistic treatment of the severe nature of Llullu's disabilities serves as a limit point of sorts for that model, reminding the reader that medical treatment is sometimes an integral part of living with disability. Nevertheless, even in this limit-case, Quieto proves to be remarkably similar to Angelicomio in that it denounces the false promise of a miraculous religious ‘cure’ for disability and actively mitigates the need for a medical model of disability even as it accepts medical treatment as a fact of Llullu's life. Moreover, the ingenious folioscope (flip-book) included in the final pages of Serra's novel (pp. 157–219) alone makes this novel worthy of critical attention, as it foregrounds matters of mobility and expresses artistically and compellingly the author-father's frustrated dream that his son one day run.
Chapter 4, ‘Documenting Cognitive Disability,’ turns to two documentary films produced by noted Spanish director Julio Medem on the topic of disability. While Medem is well known for his complex and visually stunning fiction films (e.g. Amantes del círculo polar, Tierra, Vacas; on the latter see Fraser, ‘Hacia una teoría’), he has in recent years become even more prominent as a producer through his production company, ‘Alicia Produce.’ This company, which is named after his daughter who has Down syndrome, has produced a number (p.xxvi) of films pertinent to the topic of disability. Here, Medem himself adopts a supporting role as comparatively lesser-known directors take the lead in constructing intriguing cinematic portraits of disabled protagonists. The first half of this chapter looks at the 2006 documentary, ¿Qué tienes debajo del sombrero? (dirs. Lola Barrera and Iñaki Peñafiel), which focuses on the life and art of American fiber artist Judith Scott (1943–2005), who had Down syndrome and was also deaf (see also Siebers, Disability Aesthetics 15–19; Sedgwick). On the way to suggesting innovative social and even economic models of inclusion for people with disabilities, close readings of specific scenes from the film dismantle the medical understanding of disability and examine the unusual opportunities offered by the Creative Growth Art Center, where Scott worked for many years as an artist.
The second half of chapter 4 moves on to consider the representation of disability that obtains in another (understudied) documentary film produced by Medem's company: Más allá del espejo (2007, dir. Joaquím Jordà). As with ¿Qué tienes…?, celebrated documentary filmmaker Jordà's Más aliá portrays the social significance of disability instead of a medicalized view—here focusing on Esther Chumillas, and even on the director himself, as a way of drawing attention to visual agnosia and alexia. The film is not merely informative about the social consequences of living with these neuro-visual disturbances, it also develops an artistic chess-game metaphor to invite further meditation on larger scale issues associated with the general frailty of the human condition. As with previous discussions, it is not merely the content of the film that is of interest, but also the documentary's formal properties.
Finally—following on the heels of the discussion of the representation of American artist Judith Scott by Spanish directors in chapter 4—the epilogue of this book, ‘Exhibiting Art,’ glances at paintings, comics, short stories, and poems produced by Spanish artists with developmental disabilities themselves. Rather than analyzing these works at length, instead a concise argument is made for the importance of analyzing such self-representation and self-advocacy by disabled artists in future scholarship.
(1) On the matter of the CNSE and deafness in Spain, see my Deaf History and Culture in Spain (Gallaudet University Press, 2009) as well as my essays ‘Deaf Cultural Production in Twentieth-Century Madrid,’ Sign Language Studies (p.xxvii) (2007), and ‘Spain, 1795: A Reconsideration of Lorenzo Hervás y Panduro (1735–1809) and the Visual Language of the Deaf,’ Dieciocho (2010). It is important to note the distinction between deaf with a lower-case ‘d’ and capital-D Deaf—the first being a disabled group, and the second being a linguistic minority with a shared culture. As my work with the Deaf in the past has focused on the Deaf as a cultural and linguistic minority, I have chosen not to address deafness in a book on disability such as this one—apart from chapter 4's Judith Scott, who had Down syndrome and who was also deaf.
(2) Capacitados has been distributed along with a 64-page book that greatly adds to the documentary's treatment of disability by including introductory texts as well as 26 two-page spreads featuring comments by prominent journalists, intellectuals, and performers.
(3) In my estimation this book is additionally important as in some respects it compensates for the fact that ‘Affect’ studies has been unable to substantially grapple with Disability Studies, as is evidenced from the lack of discussion of disability in the otherwise impressive collections The Affect Theory Reader (Gregg and Seigworth, eds., 2010) and The Affective Turn (Clough and Halley, eds., 2007).
(4) I was thrilled, for example, to get my hands on a copy of Alegre de la Rosa's book titled La discapacidad en el cine (Tenerife: Octaedro, 2003)—only to find that the vast majority of its contents related to disability in film outside of the Spanish context. The work is heavily slanted to focus on Hollywood films. The only Spanish titles I could find were La torre de los siete jorobados (1944) by Edgar Neville and Jacques Tourneur (starring Antonio Casal and Isabel de Pomés), El bosque del lobo (1970) by Pedro Olea (starring José Luis López Vázquez and Amparo Soler Real), La noche sagrada (1992) by Nikolas Klotz (starring Miguel Bosé), Mater Amatisima (1980) by José Antonio Salgot (starring Victoria Abril and Julio de la Cruz), and Habla mudita (1974) by Gutiérrez Aragón. Also mentioned were Los olvidados (1950) and Tristana (1969) by Luis Buñuel, and Almodóvar's Carne trémula (1997).