Following international trends, disability studies has become a flourishing academic discipline in Iceland over the past few decades. As was often the case elsewhere, disability studies in Iceland were initially focused on understanding and addressing the experiences and immediate concerns of disabled people living today, including things like education, employment and pensions, family life, and parenting (for an overview see e.g. Traustadóttir et al. 2013; Hakala et al. 2018). Research on contemporary intersections between disability and other, often overlapping, social structures or culturally specific ideas relating to gender and sexuality (see e.g. Björnsdóttir et al. 2017; Kristiansen & Traustadóttir 2004; Rice 2009), poverty and charity (see e.g. Traustadóttir & Rice 2012; Sigurjónsdóttir 2004; Stefánsdóttir 2014), along with an interest in the life histories of disabled people has also gradually emerged (see e.g. Björnsdóttir 2010; Björnsdóttir et al. 2014; Stefánsdóttir & Traustadóttir 2015). Disability studies scholars or those with disability studies interests in or concerned with Iceland—again, like their international counterparts (see e.g. Bösl et al. 2010; Stiker 1999; Turner 2012)—have even more recently directed attention toward disability in Iceland’s past.
These latter efforts are based on the premise that historical, embodied experiences of physical, mental, and/or sensory differences, how they were understood, and the cultural representations they have historically generated are not only worthy of attention, but that our collective understanding of the past will inevitably be incomplete if we fail to suitably address these matters (see e.g. Sigurjónsdóttir et al. 2013). Perceptions of what constitutes a disability predictably change over time, and, as Roy Hanes (2017) explains, ‘[T]here is no element of any society or culture where disability does not exist,’ which is no less true for the past than the present. Thus, a related motivating factor behind scholarly interest in disability histories stems from an urge to counter popular or non-specialist tendencies to offer simplistic claims or broad generalizations of past understandings of physical, mental, and/or sensory differences and of the social positions or ramifications of those who embodied such differences, particularly with respect to periods prior to the rise of industrial capitalism (see e.g. Metzler 2006: 42–43; Miles 2001; Rose 2003: 79–94). Inter- and multidisciplinary collaborations between disability studies scholars and other specialists with disability studies interests are vital in order to avoid drawing oversimplified inferences about the complex and frequently ambiguous histories of disability.
The research project “Disability before Disability” was informed by precisely these impulses. The project primarily sought to explore what may have constituted disability in Icelandic society, culture, and history before the establishment of disability as a modern legal, bureaucratic and administrative concept. Bringing together established experts and early career researchers from the fields of Archaeology, Medieval Literature, Folklore, History, and Museology, along with experienced disability studies scholars, the project employed a multidisciplinary framework to examine disability in Iceland’s past. Its temporal focus spanned the period from Iceland’s settlement in the late 9th century until 1936 when disabled people in Iceland were first collectively identified as a legal/administrative category in Iceland.1 Within the broader goal of inquiring what may have constituted disability in Icelandic society, culture, and history throughout its past, project members focused on investigating how disability figured in everyday life, to what extent disability mattered in terms of one’s social standing, and the different ways disability was discussed and narrated in the past. However, forming a single comprehensive image was never regarded as a preferred or even feasible goal. Instead, the project emphasized that disability is never just one thing even in a specific time and place with well-defined cultural, legal, and/or social structures built around the concept. As such, the collective aim of the project was rather to gather relevant source materials and to operationalize an assembly of academic disciplines in order to unearth some of the myriad understandings of disability—before disability—at various stages and in different contexts of Iceland’s past.
With this in mind, the present article provides a detailed report of the project, beginning with a description of its extensive and diverse source materials (II), which inform the different perspectives that constitute the project’s five disciplinary threads. This is followed by an account of the data collection and management processes (III), including an overview of the development, implementation, challenges encountered, and the overall value and limits of the project’s use of ATLAS.ti, a software program that facilitates computer-assisted qualitative data management and analysis. Presented next is an elaboration of the different discipline-specific frameworks and methods project members employed in order to interpret their respective source materials using a disability studies orientation (IV), which provides an overall impression of the multidisciplinary nature of the project. The article then closes with a few concluding remarks (V) reflecting on the project’s overall achievements, its potential influence on future research, and its impact on Iceland’s disability community.
Before proceeding, it is crucial to provide a few details about the involvement of disabled people in the design and delivery of the “Disability before Disability” project. From the very beginning, members of Iceland’s disability community were introduced to the project and its goals, primarily through Disabled People’s Organisations (DPOs). Members of the national DPO in Iceland attended a public seminar launching the project, which was also made accessible in various ways, such as through sign language and text-to-screen interpretation. In terms of the project’s members, the research team included both disabled and non-disabled researchers. Two of the three doctoral students who took part in the project were people with physical impairments. They were not chosen explicitly for this reason, but to varying degrees their disabilities have influenced their research areas and interests in taking part in the project. Thus, from its inception and throughout its course, the project recognized its essential investment in Iceland’s disability community.
The “Disability before Disability” project was designed not only to cover a vast period of time, spanning roughly 1,000 years, but also to involve an array of diverse source materials as well, which, in turn, stipulate different disciplinary perspectives. On the one hand, such diversity presents a number of challenges in terms of data collection and management, which will be discussed in more detail in section III below. On the other hand, this same diversity of source materials allowed for a wider scope and, thus, offered the potential of a more multifaceted understanding of disability throughout Iceland’s past.
The project’s Archaeology thread made use of both its oldest and, temporally, most wide-ranging source materials. This consisted of excavated skeletal remains stored in the National Museum, some of which date from as early as the 9th century while others are from as recent as the 19th century. The remains were recovered from both burials in pre-Christian graves and, more commonly, Christian cemeteries in different areas in Iceland. More than just the physical remains themselves were involved, however; osteological and pathological analyses provided evidence of various individual physical differences that may have been experienced and/or can be regarded as disabilities against their respective historical and social backgrounds. These include, for example, bone lesions and inflammation, cleft lips or palates, and hydatid cysts. The archaeological record alone, however, is hardly sufficient to understand how these differences may have been experienced by these individuals and regarded by others in the past. Thus, complementary material such as contemporaneous literary and legal sources were often used to provide cultural, historical, and social context for the physical remains and their respective osteological and pathological analyses.
Some of the same written sources used in a complementary way in the Archaeology thread served rather as the main source material for the project’s Medieval Literature thread. This consisted of the so-called Íslendingasögur (Sagas about Early Icelanders), a collection of around 40 anonymously authored prose narratives dating from the early 13th to the late 15th century. Though preserved in both late-medieval parchment and early modern paper manuscripts, scholars today mainly make use of modern print editions, most often from the Íslenzk fornrit series. Jón Ólafsson of Grunnavík (1705–79) famously described these sagas as stories of ‘farmers fighting one another’ (Tómasson 2003). Typically, they give an account of Iceland’s so-called ‘saga age,’ which begins with the settlement of the late 9th century and ends in the mid-11th century, shortly after Iceland’s conversion to Christianity around the year 1000. Beyond their vivid accounts of violent conflicts among Iceland’s earliest generations, these narratives present valuable images of Iceland’s pre-Christian and immediately post-conversion culture and society, which includes numerous references to the experiences and social responses to embodied differences.
Textual sources also served as the primary material for the project’s Folklore thread in the form of folk legends collected by Icelandic folklorists during the 19th and 20th centuries. Legends featuring instances of physical, mental, and/or sensory differences were selected from five edited archive collections: Jón Árnason’s Íslenskar þjóðsögur og ævintýri (1862–64, 2 vols; 1954–61, 6 vols); Sigfús Sigfússon’s Íslenskar þjóðsögur og sagnir (1922–58, 16 vols; 1982–1993, rev. edn); Arngrímur Bjarnason and Oddur Gíslason’s Veskfirzkar þjóðsögur (1954–59); Sigurður Nordal and Þórbergur Þórðarson’s Gráskinna hin meiri (1962); and Þorsteinn Erlingsson’s Íslenskar sögur og sagnir (1906; 1954, rev. edn). In addition to folk legends, questionnaire material from the National Museum of Iceland’s Þjóðháttasafn (Archive of Folkways) was also used, with a particular focus on a questionnaire from 1963 about childbirth and infancy (Rekstrarfélag Sarps n.d.). Though recorded and printed during the 19th and 20th centuries, the existence of some of the narratives, motifs, and beliefs found in this material can be traced to earlier periods. In fact, some of these may overlap with elements of certain sources used in both the Archaeology and Medieval Literature threads.
The primary source material for the project’s History thread consisted of an array of public and private records from 18th-, 19th-, and 20th-century Iceland. Because the History thread, and the project as a whole, focuses on parts of Iceland’s history predating the establishment of disability-related institutions, such institutional records were not available for examination. However, public records under examination included things like censuses, church and parish records, official annual reports, letters of exemptions for confirmation, reports on estates at death, and auction records. From the times of the so-called Móðuharðindin (Mist hardship), lasting from 1783 to 1785, until the first decade of the 20th century, most public supervision in Iceland was conducted by priests, provosts, district administrative officers, and county magistrates. Their records provide the opportunity to recover and trace the lives, everyday experiences, and particularly the public images of people who embodied physical, mental, and/or sensory differences. Of course, such records are limited in that they only offer the point of view of the officials themselves and the institutions they represent. Thus, private records, which include writings by ordinary people in the form of diaries, letters, and personal narratives, i.e. ‘egodocuments,’ are no less valuable. Naturally, all records reflect their writer to certain degrees. In public records, for example, priests used different language than district administrative officers or other secular authorities to describe members of their congregation.
Finally, the permanent collection and cataloguing system of the National Museum of Iceland, specifically as developed from its establishment in 1863 to 1936, made up the bulk of the primary source material used within the project’s Museology thread. This includes a special medical collection that was initially established by The Icelandic Association of Physicians in 1900 but was eventually brought into the National Museum’s collection. Researchers working in this thread identified various artefacts related to disability from within the museum’s collection (e.g. glass eyes, crutches, and medical tools for amputation, etc.), as well as from collections in some rural heritage museums around Iceland. Yet, their investigations of museum databases delivered surprisingly few results for non-medicalized objects pertaining to disabled people’s everyday lives and experiences. In light of these absences, project members closely scrutinized the ideas and motives behind the museum curators’ cataloguing, documentation, and interpretation of artefacts within the context of the collection. In this respect, the collection of the Hversdagssafn (Museum of Everyday Life), which is located in the town of Ísafjörður, first opened in 2016, and has the expressed purpose of investigating the mundane and the common, served an important comparative purpose. Its curatorial aim is to move beyond traditional narrative methods to create space for dynamic, fragmentary, and multifaceted stories, which contrasts with and highlights the traditional nationalistic ideology informing the development of the National Museum’s collection and cataloguing system.
In light of the diversity and richness of these source materials, the development of a common data collection and management strategy was a foundational step crucial to meeting the project’s broader goal. Such a strategy was important not only from a logistical perspective (i.e. to allow researchers to locate, document, organize, and share relevant data from within their respective source materials), but also to anticipate the full potential that a disability studies orientation could offer within each discipline, to recognize noteworthy parallels emerging across the data sets, and to help identify possible cross-disciplinary research opportunities. In addition, a shared conceptualization of disability from which researchers could develop their own disability studies orientations was needed.
Thus, when approaching their source materials at this stage of the project, researchers adopted a multi-factorial, critical realist conceptualization of disability. Such a conceptualization regards disability as ‘the outcome of the interaction between individual and contextual factors, which includes impairment, personality, individual attitudes, environment, policy, and culture’ (Shakespeare 2014: 77–78). Inspiration was also drawn from the Nordic relational approach, which somewhat similarly regards disability as ‘resulting from complex interactions between the individual and the socio-cultural, physical, political and institutional aspects of the environment’ (Ytterhus et al. 2015: 21). However, due to the vast time period covered by the project, it was also vital not to take for granted an unchanging and broadly applicable understanding of the body itself by assuming, particularly but perhaps not uniquely with respect to pre-modern sources, that all source materials should be interpreted against a historical social backdrop that privileged a ‘biologically defined hegemonic body image’ (Frog 2019: 270). With this in mind, project members endeavoured to be sensitive to the many and complex manner of details regarding and surrounding the realities, representations, experiences, and reactions to embodied differences and embodiment itself located within their respective source materials.
In order to collect and manage many of these details, the project made use of ATLAS.ti, a software program that facilitates computer-assisted qualitative data management and analysis. The project’s early career researchers developed an inductive system of codes (White & Marsh 2006), which were guided both by the above-mentioned approaches to disability as well as the project’s overall goal of examining what constituted disability in Icelandic society, culture, and history before the establishment of disability as a modern legal, bureaucratic, and administrative concept. These codes were used to locate and mark relevant details in the source materials. The coding system consisted of more than 200 unique codes, which were further arranged under nine main headings: Social Categories, The Body/Body Parts, Terminology, Causes, Context, Place, Time, Caregiving, and Community Responses. The ‘Social Categories’ heading, for example, included codes relating to things like age groups, class, gender, legal status, certain professional identities, and anonymity or non-anonymity while the ‘Community Responses’ heading featured codes corresponding to negativity, neutrality, and positivity as well as more specific responses including exclusion, fear, public involvement, respect, ridicule, support, and violence. Other additional, discipline-specific codes were also implemented at different stages of the coding process. In the medieval literature thread, for example, specific codes referring to things like berserkers, Christianization, Latin learning, revenants, and þing assemblies were added. Similarly, in the Folklore thread, codes were added referring to things like dwarfs, ghosts, hidden people (huldufólk), and the supernatural or paranormal.
The implementation of the coding system was intended to provide each thread with an overall picture of the large collection of data available to them, which could immediately help project members choose specific aspects and/or examples from their respective source materials to examine more closely. Additional discipline-specific codes created during the coding process were, furthermore, indicative of the development of a deeper understanding of the relevant factors and the, sometimes, unanticipated richness of certain aspects of the source materials when viewed through a disability studies orientation. Discipline-specific work was, naturally, a necessary step before exploring the potential for broader, cross-disciplinary, and diachronic analysis. Yet, some codes, such as those related to time periods, genres, and geographical locations, were chosen particularly with the potential for just such an analysis in mind. Conversely, as mentioned above, comprehensive analysis across the disciplines was never regarded as an easily achievable or naturally feasible goal since such an effort might run the risk of drawing conclusions based on simplistic understandings or broad generalizations concerning the experiences of physical, mental, and/or sensory differences and the social positions or ramifications of those who embodied such differences.
Using ATLAS.ti to collect and manage the variety of data yielded by the project’s diverse source materials offered exciting but also challenging opportunities to explore the project’s broader goal; namely, inquiring what may have constituted disability in Icelandic society, culture, and history throughout its past. Some of the source materials, particularly the generally uniform and unstructured nature of the larger textual collections used in the Medieval Literature and Folklore threads (i.e. texts that are generally consistent in terms of style and in following other generic conventions) made them well-suited to ATLAS.ti coding. In other words, the coding process helped to draw out appropriate data from the texts in the form of passages relevant to disability studies. The more variable and structured nature of the source materials in the Archaeology, History, and Museology threads made them less well-suited to the process. In other words, in these latter threads, since researchers initially selected much or all of their source materials based on pre-existing knowledge of their relevance to disability studies, the coding process was sometimes redundant. The contrast between the two made large scale, interdisciplinary, and diachronic analysis difficult to execute. This difficulty was also somewhat compounded by the variability and imbalance in the scale of available source materials across the different project threads, which precluded undertaking meaningful quantitative analyses. Nonetheless, through the coding process, some noteworthy parallels worthy of further investigation across the disciplines involved became apparent.
One of the most significant of these parallels is the difficulty of capturing broadly and in any kind of systematic way the vital role of both ambiguity and absence, invisibility, or silence in each of the project threads. This was not an entirely unexpected outcome since, for example, it was already known that, despite the existence of rich vocabularies referring to embodied differences, the kind of terminology now used to refer collectively to disability (e.g. Icel. fötlun) or diverse groups of disabled people did not exist in medieval and early modern Iceland. Some degree of ambiguity is also inescapable due to the frequently inconsistent and sometimes even indecipherable quality of past vocabularies and the inevitable uncertainty we commonly encounter when exploring the past through historic languages (Jakobsson et al. 2020). In terms of absence, invisibility or silence, traditional collection practices in Icelandic museums, for example, have facilitated both generalized or stereotypical portrayals as well as a typical focus only on technological solutions rather than the daily lives and experiences of disabled people (see Bergsdóttir 2021). Similar as well as other forms of ambiguity and absence, invisibility or silence were also either anticipated or found within the Archaeology, Folklore, and History threads, some of which will be elaborated upon in Section IV below.
The role of ambiguity and absence, invisibility or silence in disability history is, of course, not unique to Iceland and has been identified as one that disability studies scholarship must remain attuned to, both in dealing with the past and the present (see e.g. Hirschmann 2014; Lourens 2018; Michalko & Titchkosky 2010). Very recently, in fact, and corresponding with the experience of researchers in this project, a specific call has been made for finding ways to account for silence when implementing qualitative-data-collection practices in disability studies research (Jones & Cheuk 2020). The coding process may not have resulted in the kind of large-scale, interdisciplinary, and diachronic analysis that may have seemed conceivable during the early planning stages of the project. Yet, it remained a crucial step in allowing project members to collect and organize the relevant data from their respective source materials, to become more attuned to what a disability studies orientation could offer within each discipline, and to develop an awareness of certain parallels across the different project threads in relation to the realities, representations, experiences, and reactions to embodied experiences of physical, mental, and/or sensory differences in Iceland’s past.
Though sharing a broadly construed disability studies orientation, as described above, each of the various disciplines involved in the project also adhered to their own discipline-specific customs, histories, and practices. With this in mind, project members paid persistent attention to avoiding situating disability as something separate from other interests of the various disciplines involved. Rather, they endeavoured to show how adopting a disability studies orientation is vital to advancing our overall understanding of the past through the assorted lenses these disciplines provide. Thus, the project produced knowledge that could at once be regarded as valuable among disability studies scholars as well as by scholars, with or without active disability studies interests, working within each of the respective disciplines involved.
In working with skeletal remains, researchers in the project’s Archaeology thread perhaps faced the greatest obstacle in distinguishing their work from the traditional tendency to view disability as a predominantly or even strictly biomedical phenomenon. On the one hand, when using osteological and pathological analyses, they constantly maintained an awareness of the limits of physical evidence and the fact that disability is always contingent on the entanglement of culture, nature, and society. On the other hand, such analyses can provide evidence of signs of certain environmental factors and medical treatment, or care received, for example (Kristjánsdóttir & Walser 2021). Skeletal remains, of course, offer only circumstantial evidence of other kinds of social responses met by those who lived with physical, mental, and/or sensory differences as well as very scant insight toward their lived experiences. Of course, a person can be disabled without a specific disability being observable through their skeletal remains. Thus, the extent to which skeletal remains can indicate disability is often highly circumstantial or unclear. In this way, as alluded above, ambiguity and absence, invisibility or silence inevitably frame the disability-oriented interpretation of skeletal remains.
However, as also mentioned above, project members’ osteological and pathological analyses were at times complemented by the use of contemporaneous literary and legal sources. Relying on these sources added broad cultural and social context to the surviving physical evidence. Moreover, this material facilitated the construction of ‘fictive osteobiographical narratives,’ which were used in some cases to imaginatively reconstruct the lived experiences and histories of individuals as recorded in their skeletal remains (Haraldsson 2021). Though highly speculative, this method allows researchers to be more aware of pitfalls they may otherwise encounter when using a disability studies orientation but concurrently to make efforts to maintain an impartial distance from their evidence. By personalizing, even if through a highly fictionalized identity, the subjects of their research, archaeological researchers both generate empathy for the individual lives of the subjects of their research (see e.g. Boutin 2011; Boutin & Callahan 2019) and emphasize how disability and the body itself are always culturally, historically, and socially constituted.
Such an emphasis was more readily apparent within the project’s Medieval Literature thread, the primary source materials of which, described previously, have long been viewed as invaluable sources on the dominant social structures and prevailing ideologies and mentalities of medieval Icelandic culture and society. In fact, disability-studies oriented approaches to the medieval Icelandic sagas have developed a relatively strong foundation, first appearing in the work of Edna Edith Sayers (published as Bragg 1994, 2000, 2004a, 2004b), which has proven to be highly influential (see Crocker 2019: 40–41 for an overview). Researchers in this thread were, thus, able to build upon a pre-existing body of scholarship, but also drew on research exploring the culturally and socially constructed aspects of other embodied experiences and phenomena depicted in medieval saga writing, including emotions, old age, and trauma (see e.g. Ríkharðsdóttir 2017; Jakobsson 2005; Tulinius 2017a, 2017b). Using this interpretive framework and the traditional method of close reading, project members sought to examine the realities, representations, experiences, and reactions to the myriad kinds of physical, mental, and/or sensory differences depicted in the medieval sagas.
Yet rather than attempting to produce a comprehensive survey, project members in this thread focused either on individual sagas or on specific embodied differences featuring across small or larger groupings of texts. This included, for example, depictions of blind, deaf, and nonspeaking people, those with chronic illnesses, and people with what today might be called intellectual and mental disabilities, the experiences and public responses to whom interacted with various other social, cultural, political, and religious customs and values (Crocker 2019; Crocker 2020; Crocker & Jakobsson 2021; Crocker & Tirosh 2021; Tirosh 2020). Research was also carried out on the narrative functions of disability in the sagas with absence, invisibility, or silence emerging—in addition to those ways mentioned above—in relation to individual and cultural trauma stemming from violent physical encounters (Heiniger 2020). Comprehensive conclusions were predictably elusive. However, the work in this thread underscored the fallacy in teleological ideas about disability in the past being something that was always waiting for the present to identify and address it properly (Crocker et al. 2021). Medieval Icelanders had, in fact, developed their own, though not necessarily unified, ideas and ideologies about the body and diverse embodied experiences of which the sagas can provide an illuminating glimpse.
Though its primary source materials postdate that of the Medieval Literature thread by several hundred years, a similar conclusion generally and somewhat unsurprisingly emerged from the project’s Folklore thread. As mentioned previously, folklore material often has roots predating the time of its collection and publication. Yet, the common and accepted understanding within the discipline is that folklore material reflects, first and foremost, the culture of the time and place of its collection (see e.g. Dundes 1980; Honko 1964; Dégh 2001; Tangherlini 1994); in this instance, the primary context is the culture of 19th- and early 20th-century Iceland. With this in mind, project members employed a combination of approaches when analyzing and interpreting their source materials. They used historical discourse analysis (see e.g. Gill 2018; Angermuller 2014; Jóhannesson 2010), narrative theory (see e.g. Esterberg 2002), and the concept of cultural memory (see e.g. Assmann & Assmann 1987) to inform their close readings of their source material. Their analysis emphasized how cultural attitudes and worldviews concerning physical, mental, and/or sensory differences are deeply embeded in folk legends and traditions.
Using this framework, a search of the previously mentioned folk collections located more than 450 legends or legend-clusters relevant to the project’s overall aims. Research carried out on this material examined how folk legends depicting embodied differences are vital sources for understanding notions and mechanisms in Iceland’s past about power, normality, marginalization or exclusion, and stigma as well as ideas about diversity and inclusion. Exploring some of these same connections, research was also carried out on pregnancy superstitions, as alluded to above, as well as on interactions between disability and the supernatural. Other work explored the spatial aspects of disability in pre-industrial Iceland (Rastrick 2021) using a folklore studies approach and, by means of specific case studies, researchers also investigated how gossip and other legends relating to embodied differences emerged around the lives of specific individuals (Ebenezersdóttir & Ólafsdóttir 2021; Bower 2021). This research brought to light the complex interplay between the lived experience of physical, mental, and/or sensory differences and the living tradition of tales concerning them, with the latter enduring as no-longer living people continued to exist as memories and eventually became vibrant folkloric figures.
Rather than broad investigations of large social groups, research in the project’s History thread was similarly focused on individual lived experiences. Using the kinds of public and private records from the 18th, 19th, and early 20th centuries mentioned above, researchers working in this thread developed and employed the concept of ‘life threads.’ This refers to a process of reviewing various contemporary comments found in different public records about the subject in question, together with private documents where possible, to outline the steady or well-defined points of how those living with physical, mental, and/or sensory differences went about their everyday life (Ebenezersdóttir & Ólafsdóttir 2021: 78–79). Given the focus on the individual as a historical phenomenon, a ‘microhistorical’ approach allowed researchers to ‘search for answers to large questions in small places’ (Joyner 1999; see also Magnússon & Szijártó 2013; Magnússon 2021). Project members also employed the interconnected concepts of emotional and speech communities, which refer to how groups of people sharing economic, political, and social interests generate norms and expectations regarding the use, valuation, and expression of emotions and language (Rosenwein 2006). These concepts draw attention to the important role that emotional experiences and expressions as well as language play in historical constructions of disability. Finally, recognizing the effects of slow violence, which refers to those sometimes-invisible processes that over long periods of time inflict degradation, pain, and suffering on individuals and communities (Magnússon 2020: 133–139; Ólafsdóttir 2022), also helped researchers better grasp the realities and long-term effects of prejudice and social exclusion on people’s lives in Iceland’s past.
Using this framework, project members sought to examine how certain men and women in the past may have faced diverse obstacles to participate in society and/or were subject to various forms of marginalization on account of physical, mental, and/or sensory differences. One such example is a woman named Bjargey Kristjánsdóttir (nicknamed Bíbí) who was born in the north of Iceland in 1927 and was labelled ‘feebleminded’ by her family and neighbours. While public records offer much insight toward the society in which Bíbí lived and its prevailing attitudes and prejudices, her own writings, which total roughly 120,000 words, provide an important counter-narrative to the official public record. They reflect her own remarkable personality and experiences and reveal how her expectations for her life were very much like those of her contemporaries (Stefánsdóttir & Ólafsdóttir 2021). Public records, even official documents from various public offices and non-governmental organizations, fail to cohere around a common understanding of disability. However, the approach adopted within this thread stresses the importance of personal agency and of so-called ‘egodocuments’ (Magnússon 2021: 48–49). When placed alongside and, frequently, in contrast with public records, such source material emphasizes the important role the constant dialogue between the individual and their social environment plays in constituting disability. Public and private sources collectively reveal how fragile an individual’s circumstances could be and how a small change could turn bearable circumstances into something unbearable, both physically and emotionally (Ólafsdóttir 2022). In this respect, slow violence manifests in complex, continuous, and socially accepted abuses of power, which were often an ingrained part of the lives of people living with physical, mental, and/or sensory differences in Iceland’s past.
The project’s Museology thread similarly emphasized the importance of dialogue, namely, that between a museum’s collection and cataloguing systems and the public they serve. Though differing in many ways, like the traditional textual sources used in several of the other threads, museum collections are always organized, one way or another, to tell a story. Thus, project members working in this thread sought to examine how museum collections and cataloguing systems particularly shape the stories of those who experienced and lived with physical, mental, and/or sensory differences in Iceland’s past. As mentioned above, while traditional museum collections hold numerous medicalized artefacts, absence also plays a vital and often unexamined role in the multi-vocal understandings of the histories of those living with physical, mental, and/or sensory differences emerging from traditional museum practices. With this in mind, researchers in this thread examined these absences as matters of substance with the overarching question: If the histories of disabled people were more or less absent, and these absences had permeated collections of cultural heritage, should they not be considered matters that matter? (Bergsdóttir 2021). Building upon their own previous research on the representations of women in cultural heritage settings (Bergsdóttir & Hafsteinsson 2018) and on approaches within posthumanism, new materialism, and critical heritage studies (e.g. Alaimo & Hekman 2008; Kirby 2011; Åsberg 2013; Haraway 1992; Harrison 2012), project members developed the hybrid concept of absencepresence to examine the role of exclusion and invisibility in relation to disability in museum and heritage contexts.
When using this concept, absences are not regarded as the empty other of presence but rather become material entities in their own right. Stories of physical, mental, and/or sensory differences in museum and other cultural heritage contexts in Iceland are often either altogether absent or drastically simplified. In relation to the latter, for example, medical or technological responses to physical, mental, and/or sensory differences create a limited perspective that excludes much of the individual experiences of those who live with such differences. Yet, by simply highlighting and suggesting ways to correct some of these identifiable absences, while to some degree constituting an empowering and informative act, researchers may simultaneously obscure the importance of absence and its political implications in terms of the histories and cultural heritage of embodied differences. This is not to suggest that an interest in past and present absences should prevail over efforts to expand the histories and heritage of disabled people but that they, in fact, represent an important facet of disability history and heritage. Using the concept of absencepresence, researchers in this thread examined the nature of how knowledge is created in museum and heritage contexts as well as the role that simultaneously attending to both absence and presence can play in helping us recognize the unjustness of systems, institutions, and normalizing tendencies ingrained in society (Bergsdóttir 2021). Recognizing these facets of traditional museum practices open up new possibilities for telling the story of disability in Iceland’s past in ways where absences can be cared for and can become a part of the story as matters that matter.
The “Disability before Disability” project sought to broaden and to move beyond simplistic, stereotypical, or generalized perspectives on physical, mental, and/or sensory differences in Iceland by closely scrutinizing how disability was enacted, narrated, and socially constructed before its modern conceptualization. Project members adopted a shared disability studies orientation, which they applied in concert with an array of well-established discipline-specific methods (e.g. osteological and pathological analyses, discourse analysis, close reading, etc.) and concepts (e.g. cultural memory, narrative theory, etc.). The use of other diverse methods (e.g. fictive osteobiographical narratives, microhistory, etc.) and novel concepts (cultural trauma, life threads, absencepresence, etc.) helped to provide a deeper understanding of the rich and multifaceted cultural response to physical, mental, and/or sensory differences in Iceland’s past over the vast time period covered by the project.
The project’s multidisciplinary and diachronic approach provides an illustrative example of how adopting a disability studies orientation is central to understanding and often rethinking the past across a variety of disciplinary contexts. As such, researchers working in the same or in other disciplines exploring disability history within different cultural, geographical, and temporal contexts might draw inspiration from the project’s collaborative and multidisciplinary approach. At the same time, some of the difficulties encountered in the project could also prove instructive. For example, as discussed above, project members encountered different kinds of absence, invisibility, or silence across the project’s threads. Yet, rather than preventing them from carrying out their work, such encounters inspired them to search out or even develop new frameworks in which to conduct their research, such as the concept of absencepresence. In this respect, the project could affect broader scholarly interest in the challenging relationship between absence, invisibility, or silence and disability history.
Finally, the “Disability before Disability” project recognized the vital relationship between disability communities in the past, present, and future. Through its direct engagement with DPOs in Iceland, at public-facing events, and in a potential future collaboration between members of the Folklore thread and the Icelandic theatre group Halaleikhópurinn, the project provides representation of people who lived with physical, mental, and/or sensory differences across Iceland’s history not simply as a homogenous group defined by one common experience but as individuals with their own unique lives and stories. Responsible historical disability representation affects both society as a whole and disability communities, with the latter having a valuable opportunity to see their experiences reflected in the past. Such representation offers a long-term perspective on challenges disabled people have faced in the past and continue to face today, but not in stereotypically negative ways, and stresses that disability has been and always will be a fundamental part of human experience.
1The disability-related portion of the 1936 Lög um almannatryggingar (Law on Social Security) mostly concerns a group of people identified as fávitar (literally ‘those who know/understand little’), which refers to intellectually disabled people, and introduced three types of institutions: schools, nursing homes, and social enterprises.
The “Disability before Disability” project did not seek formal ethical clearance from the bodies in Iceland that govern research with human subjects. The main reason for this is that the bulk of the data derives from ancient texts and specimens, as well as information and artefacts retrieved from public archives and museum. The people the information refers to have long since passed away. The one exception is Bjargey Kristjánsdóttir (or Bíbí) who was born in 1927 and died in 1999. However, her autobiographical writings are stored in the manuscript department of the National Library of Iceland and are accessible to the public. Thus, they fall outside of the mandate of organizations in Iceland that evaluate primary research on living humans. Still, project members drew significant inspiration from advocacy and participatory research design methods to ensure their work was anchored in respect, justice, integrity, and ethical decision making.
The “Disability before Disability” project (2017–2020) received funding from the Icelandic Research Fund (Rannsóknasjóður), Grant of Excellence, No. 173655-05, and was led by Hanna Björg Sigurjónsdóttir, Professor of Disability Studies at the University of Iceland; see http://dbd.hi.is for more details on the project and its members.
The authors have no competing interests to declare.
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