Disability History – Genealogy and Legitimacy
“The Scandinavian model” or “the Nordic dimension” are concepts used fairly often to identify the character of the Nordic welfare states, our educational system and our disability policies at the present time as diverse from other countries in the Western hemisphere. This article, however, seeks to demonstrate that apart from these differences there is broad consensus between the Nordic and the international research field on how history of disability is to be conceived and approached. Considering the mutual historical origins of history of disability internationally and in Scandinavia these similarities and shared practices are by no means surprising. What these origins are and how they have influenced the research field and its relations to the disabilities political movement is being analysed as parallel to that of the feminist movement and research on gender. Historiographical parallels are drawn between what we may call the Nordic tradition and those of the international research field in relation to theoretical perspectives, methodological approaches and thematic foci. The articles on history of disability presented in this specific volume of Scandinavian Journal of Disability Research demonstrate both some common features and some differences between the Nordic and the international research field. Apart from these similarities between research communities, there are of course historically national, political and cultural differences that call for a comparative approach in future studies, opening up a new area of research. Adding an international historical context to the field of disability research may be a major contribution to disability studies in general as well as to history in general, according to American historian Catherine J. Kudlick in her review of research into the history of disability (Kudlick 2003). She also argues that from now on a far bolder approach in disability history is needed. Disability should be approached as a social category, rather than “be relegated to the unglamorous backwaters primarily of interest to people in rehabilitation, special education, and other applied professional fields” (Kudlick 2003:765). Developing the theoretical understanding of disability as a category for analyses of power and hierarchies is a challenging option. Disability should attract and be of interest not only to applied professional fields, but also to scholars in social sciences.
Finding other “Others” has been an important incentive in disability history, according to Kudlick. The definition of these ‘‘Others’’ at different times and within various cultural contexts reveals prevailing attitudes, morals, and cultures – offering an opportunity of reflection on present issues that is both intriguing and challenging.
The Danish ethnologist Edith M. Rønn challenges the legitimacy of history of disability as such, and as a research field in its own right (Rönn 2005). The Dutch educationalist Pieter Verstraete also argues for a cultural history as a way of de-centring the historical subject and a turn to cultural studies in disability history. Cultural studies are directed at how people interact and what their values and social representations are. The individual and personal perspective becomes less important. There is no particular focus on specific persons or institutions, which in turn may be made responsible for or given the honour of either past misdemeanours or success stories. Implicitly, both Rønn and Verstraete question the way history of disability has largely been conceived of as a one-dimensional story of rejection, deviance and stigma; staged by various religious groups, politicians, scientists or others. The answer to their criticism was actually phrased some years ago by Robert Bogdan and Steven Taylor in their essay on the social construction of humanity; “the study of acceptance needs to be added to the more common focus on rejection” (Bogdan & Taylor 1989:135). Such a dialectic approach will be pursued when various dimensions in research on history of disability in Scandinavia and the international scene is presented in the following text. First the common or different origins of interest and goals of the research will be looked into. Secondly, the various theoretical and political perspectives applied will be considered. Thirdly, the shared locus of researchers in the field on concepts such as normalcy, eugenics and citizenship will be examined. Finally aspects of and the need for comparative studies within disability studies are argued for as a future common field research for Scandinavians to join their small, but not unimportant forces with the international research community.
Whose Story is it Anyway? – Or “Nothing About Us Without Us”
Disability studies is a highly politicized field. As a consequence the dependence on political mainstream ideas also goes for history of disability, as part of a political liberation movement. In the North-American tradition, the New Disability History movement seems closely linked and seemingly quite dependent on the disability movement. In Scandinavia and in Europe there is a strong connection between the organizations of disabled people and academics, both for historical and present political reasons. Historically, this link to a great extent both in the US, the UK and in Scandinavia originates from roughly the same political sources as the Civil Rights movement in the USA of the 1960s (Longmore & Umansky 2001, Förhammar & Nelson 2004, Simonsen 2005a).
Shared or common traits have been the need to rid oneself of stigmas of the past, creating new identities contrary to old ones made up by professions, politicians and past societies. Embedded within this manner of constructing history there seems to be a stage of what have been called a “history of priority”, with a search for “the first educator of the mentally retarded”, “the first institution for the deaf-blind” and so on (Briffaerts & Verstraete 2004). The writing of institutional history for celebration and marking of jubilees is traditionally done this way. The two American historians Steven Noll and James W. Trent name these histories of the so-called progress of services “achievement histories” (Noll & Trent 2004:5). These first and often also prominent individuals both among professional pioneers and disabled people serve as idols, creating feelings of identity and self-consciousness in the present. Longmore and Umansky, however, express themselves in a more blunt and brusque way when they use the word hagiography; as if it were the biography of a saint or holy person, when characterizing such writings (Longmore & Umansky 2001:17).
The quite simple way of exploring the past and establishing history as a series of events, focusing on pioneers and institutions has been a shared activity among scholars and disability activists. When historical research moves beyond this stage, however, focusing on representations, policies and lived experiences, the relation between activist movements and researchers turns out to be not only a fruitful but also a problematic one.“ … if we want to construct our histories, we have to do it for ourselves ” was stated recently by Mike Oliver in a book review on the history of treatment of spinal injuries (Oliver 2004:416). Or as the Scottish sociologist Bill Hughes puts it, disability studies (including disability history) “is married (for better or for worse) to the movement for the emancipation of disabled people” (Hughes 2005:79). This has turned out to be a troublesome aspect between lay people and scholars in history of disability research. For instance deaf people, in accordance with the saying “nothing about us without us” do not always welcome hearing scholars who intend to write the history of deaf people.
The history of deafness has thus become the most dynamic and highly developed subgenre in history of disability both in the USA, Europe and Scandinavia, because of, not in spite of controversies and high level of conflicts. However, in some cases contributions are flawed by a linear understanding of history as progress, in accordance with the historical struggle for acceptance of sign languages and deaf culture. Concentrating merely on the dichotomy between signed and oral language in deaf history however, this perspective may function more as straight-jacket than as a road to broader understanding of the societal and personal meaning of deafness. This is an important point made by Stein Erik Ohna in his review of the book Damned for Their Difference: The Cultural Construction of Deaf People as Disabled by Branson and Don Miller (2002) (Ohna 2005).
History is also often timed in dichotomous terms, suggesting predetermination such as “from isolation to integration” used by the Canadian Margareth Winzer (Winzer 1993), or “from oppression to manifestation” as by the Danish Jonna Widell (Widell 1995). A recent Nordic conference, staged mainly by disability activists, was entitled “The road towards full citizenship” (Kirkebæk 2005). The title demonstrates how closely disability history is intertwined with present political issues, and at the same time underlining the notion that the disability movement is progressing and moving forward. This is of course an important and powerful aspect. On the other hand this perspective tends to support the idea that today's world is superior to the past – a kind of chronological imperialism. What must be emphasized is the fact that constructing disability history is both a political and a professional project – two projects that are not incompatible, but are different in nature.
Then, what is history of disability, and who is it for? These questions deal with the problem of why and how one should oppose a linear understanding of history of disability. There is a strong and fully understandable idea that history is to be constructed in order to confirm and legitimize present politics. One of the obvious consequences of being part of a highly political project is that history of disability may end up embracing a linear understanding of history, with history as predetermined and as a confirmation or verification of present correct ideologies and political views. From a present day perspective there is also a danger of being arrogant and moralizing towards the past, as rightfully pointed out by the Swedish sociologist Elisabeth Näsman (Näsman 2005). This warning may go both for disabled people engaged in disability history as well as for professionals – for instance educators like myself – when events and ideas of the past are constructed as history or as representations of the past.
Academic Engagement in Disability History
Academic interest has gradually become another source of interest in disability history, with historical analyses of how deviance or “otherness” has been constructed as disability as a main driving force. Influenced by a general interest among historians for history of the oppressed, e.g. social history, gender history and minority history, disability is emerging as part of a larger field in historical research. Why historians used to ignore or were hesitant towards disability history is related to the fact that they experienced disability as a medical category, according to Longmore and Umansky (2001). But medical history no longer deals with their topic solely as one long success story of perpetual progress in fighting illness and impairment, thus opening up their research field to other disciplines, perspectives and views.
On a general level, what has been called the linguistic as well as the historic turn in the human sciences serves to recruit academics on a multidisciplinary scale in the study of deviance, normalcy and stigma (McDonald 1996). A broad multidisciplinary interest is observed, as scholars in social sciences, especially sociology, education and social anthropology, but also those in literary studies, intellectual history and medicine engage in this field of research. Among theoretical perspectives applied and partly shared across disciplinary boundaries, both in Scandinavia and internationally, are traditional narratives of history as a series of events, as well as discoursive and constructivist approaches and aspects such as feminism, class and race.
The bonds between the ambitions of the professional academic field and the political agenda of disability studies are difficult to disentangle. The Anglo-American scene seems to interact and is more closely interlaced than what is the case in Scandinavia, maybe with Sweden as an exception. Why this is so may be a result of different historical roots and varying degrees and character of power and influence from national disability rights movements. Scandinavia has been the home of more peaceful and less militant ideologies such as the principle of normalization, while the USA saw the birth of the Civil Rights movement and the striking forces of Empowerment and Independent Living – and in the UK the social model emerged as a subversive and efficacious political tool. There is a trend towards a stronger emphasis on theoretical issues within history of disability in Scandinavia, stemming from a continental European philosophical and critical theoretical context, compared with both the USA and the UK, as articles and contributions both by Birgit Kirkebæk and Thorvald Sirnes in this volume suggest. Still, the historiographical parallels between academic research both in Scandinavia, other parts of Europe, UK and the USA are apparent. Some of these parallels will be presented below.
In her review of research on history of disability Kudlick's main focus is on what has been done in the USA (Kudlick 2003). The European academic scene, along with Latin American, Asia or any other part of the world is scarcely visible. But from our corner of the world it can be said that history of disability in Scandinavia is part of an international research field. A tentative historiographical analysis of both the Nordic and international research field of history of disability reveals origins and parallels with the genealogy of gender research and the feminist movement and the civil rights movement1. A specific trait is what may be characterized as “skeleton research”.
Skeleton Research as the Origin of Academic Research in History of Disability
“Skeleton research” – is a term to be used for research occurred by accusations of past oppression, abuse or neglect of minority groups or people in vulnerable positions. These accusations have often been voiced by mass media with their own agenda of creating sensation and scandals, resulting in massive political pressure for investigations and research. “Skeleton research” in this sense is often then initiated and funded by state authorities aimed at investigating shameful events in the past. Examples of this kind of research originating in revelations of past abuse and encroachment are to be found both in Scandinavia and internationally (Masson & Azorin 2002, Engwall 2005, Ericsson & Simonsen 2005).
In Sweden, historians such as Maija Runcis, Mathias Tydén, and Maciej Zaremba in intellectual history have revealed to what extent and for what purpose legislation on sterilization was applied more or less forcefully towards so-called feebleminded poor women in Sweden, both before and after World War II (Runcis 1998, Zaremba 1999, Tydén 2000).
In Denmark a similar process has been witnessed. In her four quite unique studies on the history of mental deficiency, or “intellectual disability” as the present way of phrasing a somewhat similar but not identical concept, Birgit Kirkebæk unveils how political and professional interests constructed the notion “åndssvakhet” (mental deficiency) as a social category in Denmark in the 20th century, much to the astonishment of both the Danish public and academia (Kirkebæk 1994; 1997, 2001a, 2004). Her research led to more “digging history” specifically into how sterilization legislation was practised in Denmark in 1929–67 (Koch 1996, 2000). In Finland, some of the similar dynamics applies to the study of forced eugenic sterilization practices, for instance by Markku Mattila (Mattila 1996). In Norway, revelations of former atrocities of past times towards those singled out as social deviants have also led to interest in the academic field. “Tatere” (intinerant people) were interned in camps, some were sterilized and had their children taken away, as shown both by Per Haave and Karen Sofie Pettersen (Haave 2000, Pettersen 2005). A couple of years ago, another group received public and political attention, leading to historical research, due to international and national media coverage. Termed “The Nazi Secret of Norway”, revolting stories of how children of German soldiers and Norwegian mothers were abused and mistreated by fellow Norwegians and by the government were published world wide both on television and through other mass media. Among the accusations towards the past were the stigmatization of the children and their mothers when they were diagnosed generally as genetically inferior and “feebleminded” by leading psychiatrists of the time, thus creating the children as a new and problematic social category in Norwegian society (Ericsson & Simonsen 2005).
While focusing on social history and history of science in what may be labelled as “skeleton research”, these studies show how hidden and unexpected parts of history of disability emerge, consisting of past, unfamiliar and long forgotten constructions of normalcy, deviance, handicap and disability. Scientists and professionals were heavily occupied categorizing, classifying and sorting people who according to their bodily or social faults represented a threat to social order and society. Today our objects of study in Scandinavia are more and more the politics, science and practice of the scientists, professionals and politicians in charge – no longer those people formerly labelled as “feebleminded”, being it “tatere” (itinerant people) or war children and their mothers. This change in perspective from those who were labelled to those in charge of the labelling procedures marks a significant change in attitude. From the traditional presentations of heroic professionals and professional progress, there is a definite trend towards more critical analyses of the past, viewing for instance professional history more as jurisdictional struggles than narratives of the past as tales of heroism and self-sacrificing efforts (c.f. the tradition of hagiographical writing according to Longmore and Umansky, as mentioned earlier).
This new direction in research in history of disability leaves little room for traditional historical work that focuses mainly on domain history or priority history; domain history as the history of a specific disability such as blindness or deafness. The move towards a more analytical approach serves to link both the fragmentary stories of each disability into a much more complex and thus more intriguing history of how bodily defects and social disadvantages have been interpreted and practised upon. This seems to be both an international trend as well as a striking feature in some of the work done in Scandinavia too. The choice of these perspectives may be interpreted as a necessary but not sufficient empirical foundation for the kind of analytical studies that were to follow. Some of these perspectives are quite new, and some date back to the 1960s and 1970s. Social constructivism, as interpreted by Berger and Luckmann in the 1960s gradually gained influence among scholars engaged in history of disability (Berger & Luckmann 1966).
Among the first critical voices raised was that of the English sociologist Sally Tomlinson, arguing that for instance history of special education was to be understood less as an example of human progress and humanitarian effort than as part of a strategy for social control (Tomlinson 1982). Followed by sociologists such as Deborah Stone and her interpretation of the “disabled state” (Stone 1984) disability history in Scandinavia have been influenced by this viewpoint. This perspective has now been criticized for its narrowness and limitations. Still it was a breakthrough in the professional understanding of educators as purely “do-goods” (Thuen 2001). Today the perspective is somewhat broadened and the scene taken in far more diverse. As Felicity Armstrong puts it: “Special education – humanitarian rationality or “wild profusion of entangled events”? (Armstrong 2002).
The Impact of Social Constructivism on Disability History
In the historiography of history of disability, the social constructivist approach was welcomed world-wide, making its strong impact in the field both in Scandinavia and internationally. As theoretical framework and point of departure in historical analyses social constructivism was introduced in history of disability by the American sociologist Robert A. Scott in 1969 when he published his book on what he phrased as “the making of blind men” (Scott 1969). This work by Scott was soon to be followed by a number of other and seemingly more influential scholars such as James Trent, Paul Longmore, Steven Noll and Lauri Umansky only to mention a few. The Scandinavians Jan Froestad, Bodil Ravneberg, René Ruby, Kristina Engwall, Judith Areschoug, Birgit Kirkebæk and Edith Mandrup Rönn in their work all explore disability as socially constructed. Mainly they end up by studying, and criticizing, past professional and political activities in the field of disability.
Historiographically, the trajectory of more or less theoretically-based perspectives pursued by scholars, both internationally and in Scandinavia, ranges from work celebrating jubilees, through a phase of criticism and focus on social control, towards a constructivist understanding and strategies for discourse analyses. Ongoing discussions of the relationship between essentialism and constructivism aim at drawing boundaries between radical constructivism, which has come under attack from Scandinavian scholars in gender research, among others. The Finnish Margaretha Järvinen argues that, while focusing on process of the social construction of a specific social problem category, researchers must not close their eyes to the fact that there are real people out there, trying to cope with their social problems (Järvinen 1998). The process of constructing problems as something apart from the problem itself, can overlook or deny the existence of the problem and what it meant to the people involved. The dilemma created here is a classical one, which applied to the concept of disability appears as the controversies over the correct understanding, definitions and terminology within this field, and also to existing critique of the social model as inadequate in regard to understanding the position of the individual. A strong advocate for this multi- dimensional approach to disability including the physical sufferings and hardships disabled people may experience is the Norwegian Barbro Sætersdal (Sætersdal 1999a, 1999b).
At the very centre of this theoretical interest is of course Michel Foucault, under whose influence a majority of the main studies in disability history in Scandinavia have been carried out. Naturally those studies touching upon history of psychiatry, which are abundant both in Scandinavia and internationally, are mostly all Foucauldian in a sense. In Scandinavia, Birgit Kirkebæk is the most prominent exponent of the Foucauldian approach in disability history, together with Barbro Sætersdal, Hans Clausen, Ingrid Markussen and Rene Ruby (Clausen, Kirkebæk & Sætersdal 1998, Kirkebæk & Markussen 1997, Ruby 2004). Kirkebæk applies the theoretical framework of Foucault very much in line with the official policy in the introductory volume of the newly introduced online journal Foucault Studies “as an invitation, not the name on the door of a closed club”2. The French historian Henri-Jacques Stiker has been a proponent for this approach in history of disability for decades (Stiker 1982/1999).
His work, A History of Disability, has been published in the US-based series Corporealities: Discourses of Disability, a series that aims at expanding the theoretical and interpretative repertoire of Disability Studies3. A recent collection of essays published in this series, Foucault and the Government of Disability, shows how Foucauldian thinking is gaining influence beyond Europe as the Australian-, US- and UK-based journal FoucaultStudies is an additional example of this. Another fresh illustration of how Foucauldian theory is applied within disability history is the article “The taming of disability” by Pieter Verstraete (2005). Apparently Michel Foucault is a leading philosopher in the field, but he is not the only one. The German historian Reinhart Koselleck provides the discourse strategies for timing and spacing concepts essential to disability history (2002). Complementary to Koselleck the American James Wertsch analyses how collective remembering functions (Wertsch 2002). Together they present a combined theoretical framework applicable in disability history, both as a political and an academic project; a framework to be discussed towards the end of this introduction.
The Norwegian political scientist Thorvald Sirnes in his article within this volume discusses how the dichotomy normalcy – deviance in the Foucauldian historical interpretation leaves a lot to be considered in relation to perhaps the ultimate institution where power is exercised in historical time up to now: the concentration camp. Sirnes draws both on Foucault and on the perspectives of the Italian philosopher Giorgio Agamben in his analysis of how human life within a modern bio-technological paradigm is uncategorized, unrecognized and thus unprotected in times of pre-natal diagnostics, research and therapy.
“Who Calls so Loud…”
From the time when networks, newsletters and conferences in disability history were established in Scandinavia about 20 years ago, they have all stood out as meeting places for a variety of disciplines and methodological approaches. Whereas some overarching theoretical perspectives have been a common point of departure, such as social constructivism, the multidisciplinary approach has still offered a variety of other theoretical perspectives and methodological contributions. In this respect research in Scandinavia is on a minor scale, but not very far from what is done in more extensive ways elsewhere. In their extensive and multifaceted book on the history of intellectual disability in the USA, the authors Noll and Trent make a call for three new historical explorations, and make a start at them (Noll & Trent 2004). They ask for more historical literature of institutions for the mentally retarded, stating that institutions for the mentally ill have taken the foreground. This cannot be said to be the case in Scandinavia, were institutions for the so-called mentally retarded have been studied from ethnographical, pedagogical and sociological angles as well from theory of professionalism (Rønn 1996, Kirkebæk 1994, Kirkebæk 2001a, 2004, Engwall 2000, Areschoug 2000, Simonsen 2000).
Noll and Trent also argue that the history of cultural representations of disability must be told, while at the same time presenting an interesting onset in this direction on literary representations of the “feebleminded” around the start of the 20th century (Keely 2004). The literary approach is an expanding and important one. By identifying disability as a new theme and issue for historical research, not belonging to any particular branch, academics within a broad range of disciplines have somehow found an angle or an analytical tool for their work. For instance, studies of the impact of literature and media on cultural constructions of disability now form an important field in disability history. This trend is apparent internationally, as in Disabilities Study Quarterly (2004:1), where disability culture in children's literature was presented4. Applying narrative theory on for instance “Lenny”, John Steinbeck's famous character in Of Mice and Men who strongly influenced representations of disability in the USA, literary use of disability as a metaphor is studied in an enlightening way (Chivers 2003).
In Scandinavian disability history, Barbro Sætersdal made new ground when applying both social representations and narrative theory as conceptual tools in Scandinavian fiction presenting disability (Sætersdal 1999a, b). International literature is a meeting point for literary studies in disability history, as a joint venture across national and linguistic borders. One example is a study of how Charles Dickens in his novel NicholasNickleby (1839), gives one of the first literary portraits of a young man with a disability, influencing audiences both in Europe and in the USA. The miserable Smike, though severely affected by cerebral palsy, is very much the hero of the book, along with Nicholas himself (Simonsen 1999). Nicholas and Smike are both members of an itinerant theatre group. It is Smike who instructs Nicholas, with humour and talent, how Nicholas shall teach Smike the famous lines from the balcony scene in Romeo and Juliet; “Who calls so loud?” (Dickens 1838, 1978:405).
Among the variety of methodological approaches offered within disability history is oral history, as exemplified by a contribution by the American Jeff Moyer with his audio documentary “Lest we forget”. It deals with state institutions, segregation and what he talks of as “The Continuing Movement to Community Integration”5. While media tend to tell stories of past miseries in capital letters, and as the Grand story researchers are bound to search archives and analyse data meticulously on a small scale, a bottom-up approach often reveals other truths than those reported in media headlines. It has been argued that disability history may be told through a magnitude of small stories rather than aiming at the Grand Design (Kirkebæk 2001b). Jane Read argues in the same way in her case study of a programme for special education implemented in London around 1900 (Read 2004). Far from aiming at telling anything in line with the so-called Grand story, scholarly contributions tend to present other and more complex versions of the past, consisting of the many small stories demonstrating human and cultural diversity. This is how the Norwegian Bente Edlund approaches her study object in her article in this volume. Her study focuses on how employees in anthroposophical institutions for disabled children acted during the Nazi regime in Germany. In her article, Edlund explores to what extent the position of being an outsider in German childcare and education, such as the Rudolf Steiner movement and Waldorf schools made it possible for some of these professionals to stand up against mainstream Nazi politics of experimenting upon and killing disabled children and young people.
Normalcy, Citizenship and Democracy
Traditions of both conceptual understanding and method of a discipline will direct how disability is operationalized and approached. What is seen and accepted as a topic of academic interest is dependent on which discipline the researcher belongs to. With a majority of historians and scholars in social sciences, no wonder concepts such as normalcy, citizenship and democracy have been at the centre of attention both in Scandinavia and in the Anglo-American sphere while cultural approaches from scholars in the humanities have been quite few and far apart.
Additional key concepts within this tradition are eugenics, professions and the welfare state – all intertwined and closely connected with the concepts mentioned above. What we today talk of as intellectual disability in its many intriguing forms, interpretations and representations throughout history, constitute the very centre of interest and activities within disability history worldwide, as a quick glance at the state of the art soon reveals. Historical interaction between normalcy, citizenship, democracy and past constructions of mental deficiency offers a theoretical perspective that can be applied in order to understand both the impact of modernity on Western societies.
Some of the main characteristics of the emerging Scandinavian welfare states were the struggles over jurisdiction between professions for controlling the concept of normalcy, and implicitly the power of drawing the line between the deserving and the non deserving of societal support (Kirkebæk & Simonsen 2001). The Norwegian political scientist Jan Froestad argues that normalcy and disability are closely intertwined. Normalcy and the protection of normalcy was an inherent element in modernism and must be taken into consideration in all studies of modern history (Froestad 1998). Froestad is on terms with the English historian Mathew Thomson and his analysis in the book The Problem of Mental Deficiency. Eugenics, Democracy and Social Policy in Britain c. 1870–1959. Thomson displays how the construction of mental deficiency in England in the first part of the 20th century was heavily involved in the discourse on democracy and citizenship (Thomson 1998). Thomson also challenges the notion of the impact of eugenics as the one and only factor in constructing mental deficiency as a threat to population quality.
The flexible character of the category disability in terms of citizenship and normalcy is reflected in an example from the USA in World War II. Exceptional war times called for new interpretations of men labelled mentally deficient. When their country needed them they were re-diagnosed and enrolled in the work force, only to be returned their former status when the war was over (Gelb 2004).
Eugenics or Disability as an Adaptable Social Category
Eugenics as science, as political tool and as a professional field has played an important part in deconstructing disability in history, both internationally and in the Nordic countries. The two Swedish historians Judith Areschoug and Kristina Engwall have studied social and scientific contributions to the historical constructions of mental deficiency in relation to children and women, constituting diagnoses that made these people easy target of negative eugenics measures (Areschoug 2000, Engwall 2000). The main and most comprehensive work on the history of eugenics in its many facets in a Scandinavian country is done by Birgit Kirkebæk. Kirkebæk addresses professional jurisdiction, politics on poverty and value systems of the emerging Danish welfare state, the alleged connection between female sexuality and mental retardation in her article in this volume. As shown by Kirkebæk and others, eugenics was crucial in defining mental deficiency and other constructions of disabilities. At the same time, eugenics as an analytical tool serves as an eye opener to gender issues and to politics of child welfare and social policies in general. The American historian Molly Ladd-Taylor shows this in her study of “The Sociological Advantages” of Sterilisation in Minnesota between the two world wars (Ladd-Taylor 2004).
The widespread fear of creating “an unmanageable social class”, as phrased by Paul Longmore, led professionals to try to prevent social (and of course sexual) intercourse both between the deaf, the blind and the mentally deficient (Longmore 2003:43). Literature on Deaf people and eugenics disclose prosecution, abuse and cruelty by state authorities, especially in Nazi Germany (Biesold 1988, Ryan & Schuchmann 2002). Some deaf people, and their teachers assisted the Nazi regime in their efforts to eliminate the deaf community. This submission may be caused by fear and also by the impact of symbolic violence, as termed by Pierre Bourdieu, a mechanism making victims of oppression internalize their ideas and identify with their oppressors. An example of such an analysis is given by the Norwegian criminologists Kjersti Ericsson and Dag Ellingsen in a study of German-Norwegian war children (Ericsson & Ellingsen 2005).
Thus, eugenics may be approached from a variety of angles, serving as a valuable prism revealing former policies towards unwanted individuals and groups of people in terms of marginalization, internment, sterilization and euthanasia. The American historians Mitchell and Snyder argue that disability and race are mutual projects of human exclusion, both based upon scientific management systems developed within modernity: “While fears of racial, sexual and gender-based “contamination” served as the spokes of this belief system, disability, used as a synonym for biological (or in-built) inferiority, functioned as the hub that gave the entire edifice its cross-national utility” (Mitchell & Snyder 2003:843). In line with this way of interpreting social constructions of disability within a eugenic context medicine and the so-called “medical model” have been core concepts within disability history as well as in disability studies of today. But as Mathew Thomson seeks to add new dimensions beyond eugenics to the construction of “mental deficiency”, the American historian Alice Carey seeks to empty the concept of “medicalization” of its potential. Carey holds forward the limitations of medicalization as the proper perspective of understanding the historical oppression of deaf people, their language and their culture (Carey 2003).
Within disability history worldwide there is a tendency towards widening the meaning of disability, particularly mental deficiency, as a social category, adaptable to ever-changing societies. From primarily using eugenics as a framework of understanding how mental deficiency has been constructed scientifically and handled politically, there is a growing awareness of the past fear of widening the borders of democracy and citizenship as a vital part of the meaning of mental deficiency. The struggle to keep people of alleged inferior race and sex from getting the right to vote is quite parallel to that of keeping the “feebleminded” from becoming worthy members of Western democracies. From World War II there are examples of how the parameter normal – subnormal was used both to define and demonize the enemy, who ever he or she might be. In the aftermath of the Spanish Civil War (1936–39), so-called “Red” mothers and their children were diagnosed by Spanish psychiatrists as mentally and genetically inferior and a menace to society (Richards 2005). A parallel procedure took place when Norwegian psychiatrists handled and diagnosed children of German fathers and Norwegian mothers after World War II with a similar conclusion (Ericsson & Simonsen 2005).
Disability in Time and Space – a Field of Political and Theoretical Potential
How to move ahead in disability history and make it a field that matters both in disability studies and beyond? It has been demonstrated here how the disability history is moving from disability specific histories to analyses of social processes of categorization and professional and political influence on these processes. Disability is more than personal identity and social phenomena. It is also about power and access to material resources, as pointed out by, for example, Longmore and Umansky (2001). The extensive repertory of significance, representation and meaning of the concept disability indicates that comparative studies of disability history may indeed be productive. By adding an international historical context of comparison to the field of disability history, this research may contribute substantially to new theoretical perspectives on disability studies in general, with the goal of generating new theoretical perspectives and patterns. In addition, there is more to comparative analyses than just identifying similarities and differences, although interesting enough when performed on various societal levels; individual, local or as national politics, science and law (Crook & McCulloch 2002). Embedded in comparative historical research lies a prospect of further exploration of disability as a theoretical perspective for analysis along with race, gender, age and class, with a potential impact both in disability studies and in history as discipline. Approached in this way, comparison between nations and cultures as well as between disabilities may further our understanding of past and thus also present influences and interaction between nations as well as between cultures. The restructuring and rephrasing of alleged distinctive periods in disability history may be one valuable and much needed outcome of comparative work.
The need to re-conceptualize notions within disability history is just as strong as the need within disability studies to challenge existing ideas and norms. In their recent article “Presage of a paradigm shift?" Beyond the social model of disability toward resistance theories of disability?", Susan Gabel and Susan Peters advocate that a more eclectic "model" welcoming diverse paradigmatic representations are needed (Gabel & Peters 2004). One may perhaps not agree with the proposal put forward by Gabel and Peters of applying resistance theories when interpreting disability, but their discussion demonstrates the need for historical contextualization when prevailing concepts are being challenged. Comparative studies of historical living conditions and life experiences of people classified as handicapped or disabled may, offer material for reflection in the present debate. Thus comparison in disability history is argued for from several positions and scholars, but so far fairly little has been accomplished. Within the history of eugenics there has been some initial research with a comparative aspect in Scandinavia. A study of the impact of eugenics and the care for the mentally retarded in Scandinavia in the inter-war years is one of the few comparative studies of disability history in Scandinavia (Froestad & Simonsen 2000).
Disability history as a research field is coming of age, both in Scandinavia and internationally, as demonstrated here. That means that an extensive volume of empirical data from the field; far from complete, but still a vast amount has been gathered, analysed and discussed. At this stage this research field is faced with a number of challenges; both political and theoretical; hopefully meeting the claim for jurisdiction in the field of disability history made both by the disability rights movements and the scientific community as two sides of a coin, as stated initially in this introduction.
In a sense the two positions exemplify what James Wertsch, the American, describes as the two main ways we as human beings generally tend to understand and construct the past (Wertsch 2002). Wertsch regards collective memory or collective remembering, the popular or common sense history, the social representation of history so to say essentially is an identity project. Collective remembering, both within an individual and nationally, usually conveys history as a story of heroes and victims, with little or no room for ambiguity. In his interpretation of the alleged opposite position, that of the professional historian, Wertsch pictures his or her research as an activity that aims at arriving at an objective truth, insisting on being able to reverse existing narratives in light of new evidence. What is interesting here is that Wertsch argues that these two approaches have much in common – and that collective memory may serve as an overall description of the core character of scientific so-called “objective” history too. Or as Wertsch states: human beings are basically storytellers – being it historians or other people.
One shared dimension however of collective memory and scientific history is that both may be seen as identity projects, according to Wertsch. As such, both tend to leave out what may appear shameful and negative, for political, national or and personal reasons. This characteristic takes the form of amnesia or silences, both in collective remembering as well as in scientific history. This is revealed in history of science, when the skeletons start falling out of the cupboards, embarrassing both to the public and to the state. The German–Norwegian war children is one example of this. After 45 years of total silence – both public and private – this group of people surfaced as a national shame and personal shameful affair when they appeared on the public scene in about 1990.
The second meeting point between the historical project of the disability rights movements and scientific disability history is the well-known basic human tendency to create a dimension of “us” in “contrast” to “the others”. In historical research Reinhart Koselleck advocates a theoretical interpretation of conceptual history as one way of coming to grips with the historical processes of creating “others” in contrast to “us” which is meaningful both for understanding the past as well as the present (Koselleck 2002). Analyses of the historical semantic space along basic counter dimensions such as inside/outside, “us/them” “up/down, demonstrate how general terms in disability history are constructed socially and politically, how people came and still come to be defined as worthy as opposed to unworthy, as curable as opposed to incurable, as useful or not useful, as educable or uneducable and bio-ethically as worthy of living or unworthy of living. These are vital matters both past and present, issues to which empirical data as well as theoretical perspectives derived from the entire field of disability history may contribute in ways that may prove to be significant.
Returning to the issues presented initially in this essay – of whether disability history can be said to be a discipline in its own right, there still seem to be a number of answers to that question, depending on the purpose and mission of the historic work. From a disability activist point of view the answer seems to be “yes”. From an academic position, however, the answer is neither “yes” nor “no”. In order to make full use of the potential for generating new theoretical perspectives on mechanisms for marginalization, social exclusion but also inclusion, historical data on disability offer a new and promising field of research, calling for boundary work both within a multi- and an inter-disciplinary approach.