Voicing the silenced – One Million Voices and the Danish disability experience
Bjørg Kjær, Aarhus University
In the field of disability, Denmark has an international reputation as a groundbreaking welfare state, with various educational and social measures targeting citizens with disabilities. Based on an outline of the emergence of this narrative, I provide examples demonstrating how, following decades of cutbacks and neoliberal policies, the current situation is quite precarious.
The grassroots movement One Million Voices (En million stemmer) is presented as a contemporary example of the Danish fight for disability rights and welfare based on which I discuss efforts to give voice to citizens with disabilities and their families. I analyse the national narrative of Denmark as representing a gold standard for disability rights and welfare, arguing that this discourse plays an important role in contemporary struggles to ensure and improve disability rights.
Spivak (1985, 250 ff.) analysed the epistemic violence embedded in Western discourse about the native Indian, concluding that these forms of violence not only legitimize oppression and subordination, but also mute and objectify the oppressed in a process of “othering”, positioning them as subaltern. She used the term to analyse how the notion of “the native Indian” was historically established by British colonialists’ descriptive – but also highly normative and hierarchical – gaze from “above”. To construct Britishness and whiteness as superior, the native was defined as inferior, primitive, and oppressive. Spivak especially focused on the case of “Hindu widow sacrifice”, which, since its abolition by the British in 1829, has been presented as “white men saving brown women from brown men” (ibid. 92). She emphasized how this subalternity was still present and therefore needed to be addressed in contemporary representations of “native Indians”. Nevertheless, she warned against applying the term subaltern broadly as a synonym for oppressed, arguing that this term should only be used when the discourse that defines and describes the other is crucial for the definition of the oppressor. In this article, I examine the relevance of the term subaltern with regard to the Danish disability experience. Like Spivak, I begin by outlining the historical emergence of the disabled as othered and voiceless subaltern, before examining the current situation in Denmark to understand how the historical discourse continues to have an impact through contemporary manifestations.
The historical context in Denmark: centralized incarceration, decentral normalization, mainstreaming and recentralization
With the emergence of the welfare state, Denmark established itself at the forefront of new approaches to people with disabilities (Kragh, 2022; Kirkebæk, 1993) – a position that, for better and for worse, was widely considered progressive. The ways in which the field of disability has been discursively formed can be divided into epochs, defined by and establishing different logics and rationalities concerning the gaze on people with disabilities and their position in society.
Expansion, centralization, and incarceration
Around the turn of the twentieth century, there occurred what has alternatively been referred to by the historian Jesper Vaczy Kragh as “the great expansion” (2022: 29) and by special needs teacher and disability researcher Frank Bylov (2010) as “the great incarceration”. At this time, a eugenics paradigm dominated, resulting in the comprehensive segregation of the disabled through the use of diagnostic categories such as “morons”, “idiots”, and “morally defective”. The Binet-Simon intelligence test and its Danish variants (commonly referred to as Brejning I-III) was the tool used to distinguish between the “normal” and the “abnormal”, (Kragh, 2022: 20-34). Those identified as abnormal or deviant were placed in large, centralized institutions (Kirkebæk, 1993; Kragh, 2022), fitting the description of what Erving Goffman characterized as total institutions where inmates lived their whole lives inside the walls (1961). Goffman pointed to the institutional logics of the asylum as one that functions through several forms of violations vis a vis the patients (ibid.). At the time, this was regarded (most probably accurately) as representing an improvement in the care provided to such individuals. The cost of institutions and (later) social services for people with disabilities is a topic that has been discussed throughout the emergence, expansion, development, and cutting back of the Danish welfare state. Whether it is reasonable to “build castles for idiots” is a question that, in various forms, has regularly appeared on the political agenda (Kragh, 2022: 28). In Denmark, the dominant narrative positions the Social Reform Act of 1933 as marking the birth of the welfare state. However, these reforms were also driven by and intertwined with the eugenics movement, serving twin purposes of ensuring the welfare of those categorized as “defective” and deemed deserving of care and support (værdigt trængende) and ensuring that the number of such individuals did not proliferate (Koch, 1996).
Parallel to this segregation and institutionalization policy, from the late 1920s Denmark also began a programme of involuntary sterilization of those men and women who were considered a threat to public health and morality, in part with the goal of preventing the overall degeneration of the population. A further intention was to diminish the human, moral and financial costs of their lives (Koch, 1996; 2000). Forced sterilization was performed in Denmark until 1967 (ibid.). While this policy has since been heavily criticized, it is important to remember that, at the time, it was considered progressive and based on what were then cutting-edge scientific theories. During this period, Danish ideas, practices, and institutions were presented to an international audience as examples to follow (Kragh, 2022: 42). Highlighting humane and progressive aspects, life in such institutions, set in the countryside or on sparsely populated islands, was described as offering healthy, dignified forms of education and treatment of the “morally handicapped” (Kirkebæk, 2004). The Danish historian Lene Koch in particular has emphasized this view while pointing to new, more voluntary forms of eugenics that are still practised today, such as foetal diagnostics to prevent the birth of children with disabilities (Koch, 2000). One consequence of these contemporary practices is a dramatic decline in the number of children born with Down’s syndrome (Zhang, 2021).
In summary, the early years of the welfare state were characterized by the systematic othering and muting of humans with disabilities through segregation, positioning these groups as a voiceless subaltern. The focus was on protecting society from such people and the eugenic dangers they were perceived as presenting through a strategy of containment. These discursive constructions of people with disabilities as deviant, deficient even dangerous motivated and legitimized their silencing, incarceration, and pathologization.
Decentralization, de-institutionalization, and normalization
From the mid-1950s onward, criticism of the diagnostic and institutional practices concerning the “feeble-minded” or “mentally retarded” grew, initiated by newly established associations for the families of those incarcerated in the centralized institutions (Kragh, 2022). This included critique of the (mis)use of the broad and non-specific category of mentally retarded to label a broad range of social deviance (cf. Becker, 1963). Increasingly, the so-called treatment as well as the living conditions in the centralized institutions were considered inhumane and outdated. Inmates were left no room for privacy and, based on the assumption that they were dangerous, the use of force was routine, with inmates placed in straitjackets or, later, restraining belts (Kragh et al., 2015.; Kirkebæk, 1993; Bengtsson & Kristensen, 2006). There was also criticism of the medical dominance and unrestricted power of psychiatrists. Following the recommendations of a government appointed committee addressing this issue, a new law came into effect in 1959 (Kragh, 2022). Subsequently, a new management structure was established with doctors sharing power with a board comprising administrative, pedagogical, social, and medical professionals. The large, centralized institutions for the disabled were nationalized and made subject to external control.
To further ensure improvements to the field, the legal expert (jurist) Niels Erik Bank-Mikkelsen was appointed head of national disability services (forsorgschef). He was heavily preoccupied with the legal rights of people with disabilities and played a key role in the transformation of the field of disability in Denmark in the years to come. Bank-Mikkelsen has come to be seen as a heroic figure in the national and international narrative of Denmark as representing a gold standard for welfare services for people with disabilities. He helped transform the lives of people with (intellectual) disabilities by introducing an agenda where the goal was to give such people “an existence as close to normal as possible”. Bank-Mikkelsen’s principle of normalization was not a matter of treating people with disabilities to make them normal, but of allowing them to live lives mirroring those of other citizens. This intention was achieved with the Decentralization of Special Care Act of 1980 (Særforsorgens udlægning) (Bengtsson & Kristensen, 2006). At the core of Bank-Mikkelsen’s efforts to reform the sector was a belief in the right of people with disabilities to education, independent living, a job etc. This belief was based on values of equal worth, equal rights, and the normalization of the lives of all human beings, including those who deviate from the norm. Bank-Mikkelsen can be considered an early advocate for disability rights, inspired by the United Nations’ 1948 Universal Declaration of Human Rights. Because of Bank-Mikkelsen and his focus on disability rights and his cooperation with the aforementioned family associations, the Danish state modernized the organization of its welfare services for people with disabilities, shifting from a highly institutionalized and medicalized rationale to a focus on education, decentralization, minority cultures, everyday life, and normalization (Bylov, 2010). In broad strokes, this process took place with Bank-Mikkelsen, as a centrally placed government official, working closely with the associations for families, which established a foundation for a relationship between the two parties based on the pursuit of consensus. As such, the initial critique from families concerning the treatment of people with disabilities resulted in a more dialogue-based and less patronizing approach. Voices were raised by and given to those organizations for families advocating for the rights of the disabled. However, the individuals with disabilities themselves were still not heard, as they continued to be seen as incapable of raising their voices in relevant ways.
The large, centralized institutions were shut down, with responsibility for the sector delegated to county authorities as a core task and inmates placed in smaller communal sheltered housing facilities, no longer legally defined as institutions but as residential homes. Children and young people with disabilities’ right to education was legally secured, and the previous practice of handing over responsibility for their care to medical experts in institutions was dropped. Instead, the goal was now for them to grow up in their family home while attending daycare facilities and schools for children with special needs, before leaving their childhood home and moving into individual or communal sheltered housing with educational support. In other words, they were to live a life as close to normal as possible in terms of structure and values. In hindsight it is clear that, while during childhood and adolescence this normalized life involved a similar level of institutionalization as a “normal” childhood in Denmark, adult life involved a far greater degree of institutionalization compared to non-disabled citizens. The segregation that characterized the era of centralized institutionalization and incarceration was replaced by a modernized form of segregation in special schools, sheltered housing, and everyday activities for people with special needs mimicking normal working life. The overall paradigm shift introduced a pedagogical rationality that replaced the previous medical gaze. The goal was no longer to heal, but to educate and create meaningful settings for everyday life.
Voices from within
From the late 1980s, there have been attempts to organize from within the disability community by forming collective user groups, heavily supported by the more established organizations for the families of people with disabilities (Bylov, 2010). They also received support from professionals with educational and pedagogical training who sought to free the disabled from “disabling parental care” (ibid.). These grassroots movements staged spectacular activism but were generally met with mildly patronizing indulgence (ibid.). In 1993, a separate association was founded with, by, and for people with intellectual disabilities, the National Association of the Developmentally Handicapped, (in Danish: Udviklingshæmmedes LandsForbund, ULF), with the aim of working for change by raising voices from within the disabled community. The organization still exists today with a sharp profile of giving voice to people and groups with intellectual disabilities. When protesting against budget cuts in 2011, the chairperson Lisbeth Jensen gave a speech at a political demonstration, demanding that politicians and professionals listen to these voices and stating: “I have had enough: I am tired of being called cuckoos in the nest in the media; I am tired of my work not being seen as real work, but as a social measure…. I am fed up with them talking about us as if we were cows, wanting to save money …. you call us developmentally handicapped (referring to the Danish term udviklingshæmmet), but at least that means that we can develop!! So come on, listen to us! We want to be treated with respect… Ask us what help we need!” (Jensen, 2011).
Post-1980 and the adoption of the Decentralization of Special Care Act, the principle of sectoral responsibility became one of the core instruments in Danish disability policy. This principle is based on the belief that authorities within various sectors (such as the housing sector and the health sector) should be required to consider the rights of people with disabilities when developing and implementing policy. This structure was thought to provide better protection of these rights than the previous compartmentalization of all disability issues throughout the lifespan as a separate sector. The principle of sectoral responsibility was thus seen as offering effective protection against tendencies for institutions to become totalizing in the sense of Goffman’s total institutions. The field of disability hereby seemed to follow the general expansion and logics of modernization and democratization that characterized Danish welfare institutions during this period.
To sum up, the era of “normalization” saw small signs of the silenced others, the subaltern, being given a voice and themselves trying to raise their voices. The cultural paradigm made this possible by beginning to position the subaltern as social agents who could have voices of their own, albeit within the framework of the segregated disability community. However, the major improvements in the living conditions and rights of people with disabilities were not accomplished by those with disabilities themselves, but through the advocacy of their parents, siblings, and other allies.
“We are the champions…”
To this day, the 1980 reform of the (mental) disability field marks the establishment of a “gold standard” for disability rights in the context of a modern welfare state. When the UNESCO Salamanca Statement concerning the need for inclusive education was adopted in 1994, it was perceived in Denmark as a document of international importance, but with little relevance to the local context because its goals were seen as already achieved in Denmark. The dominant discourse was that all major issues had been solved by an established and well-functioning welfare state that was “the best in the world” (Kjær, 2019). The fact that Denmark continued to have a highly segregated special needs system throughout the 1990s and 2000s was not seen as a problem, but rather as something to be proud of, proving that structures and rights existed to support people with disabilities – structures and rights that were lacking in many parts of the world. This positive national self-image played an important role in the frictions and conflicts surrounding disability rights in the 2000s onwards, permeating everything from politics and management to everyday educational and care practices.
Austerity, legal uncertainty, and activism
In 2007, a major reform of local and regional governance structures was implemented in Denmark. The number of municipalities was reduced from 271 to 98, while the 18 counties were abolished and replaced by 5 regions whose primary responsibilities concerned the health sector. As part of the negotiations, much of the responsibility for the field of specialized social services, which includes services for people with disabilities, passed from the counties to the new, larger municipalities. Many people warned that this would mean a loss of expertise, but their warnings were not heeded. This meant that municipalities took control of any institutions that happened to be located within their boundaries. The new principle was that the municipality was responsible for providing services to local people with disabilities. With purse strings tightening in the wake of the global financial crisis of 2008, people with a diverse range of disabilities were grouped in the same local institutions, regardless of whether or not they were part of the institution’s target group. This started a process of de-specialization and loss of knowledge and skills as recurring budget cuts accelerated the sector’s impoverishment, with mainstream institutions such as schools and daycare financed from the same pool of money. There are even examples of young adults with disabilities being placed in residential care for the elderly if more suitable facilities did not exist locally. The global financial crisis led to extensive cutbacks within the public sector, with municipalities forced to prioritize resources and make difficult decisions. Politicians at the national level set an agenda of expenses running wild, placing strict limits on municipal budgets, and restricting the municipalities’ rights to raise local taxes if necessary (budgetloven).
All these events had a severe impact on people with disabilities, impoverishing the institutions providing care and services and thereby the everyday lives of those dependent on such care. There has been an increase in the number of complaints over municipal rulings and in the number of errors identified in municipal case work (Lindhardt, 2017). The threat to the legal rights of people with disabilities is so great that the Danish Bar and Law Society (Advokatsamfundet) has recommended that action be taken (Møller, 2020). Both family organizations and various researchers within the field have documented and argued that the current situation is so burdensome that it poses a danger to the well-being and health of people with disabilities and their families (For Lige Vilkår, 2019; Falster, 2021). Prior to so-called Inclusion Act of 2012, requiring municipal primary and lower secondary schools to become more inclusive, the agenda of inclusion had been discussed in terms of and motivated by both economic and educational arguments within Danish politics. These arguments emphasized that the high costs of segregated special needs education were no longer sustainable as they took resources away from mainstream education. Consequently, inclusion and disability support efforts became highly individualized institutionally, professionally, and for the citizens, as they were scattered among mainstream pupils. Especially since 2007, the economic downturn and the proliferation of neoliberal policies focusing on efficiency, rationalization, and budget cuts has resulted in what has been called the austerity state (Runswick-Cole et al., 2016; Tyler, 2020). While the key institutions of the welfare state have been preserved, they have been hollowed out, existing as more or less empty shells that no longer ensure the legal rights of vulnerable groups.
One million voices – parent rebellion 2.0
On 22 February 2019, the grassroots movement One Million Voices (#enmillionstemmer) was founded by parents of children with disabilities and other forms of vulnerability. One Million Voices quickly became a broad social movement involving people with disabilities themselves, their families, and others advocating for disability rights regardless of diagnostic categories and municipal boundaries (). The initial goal was to fight to prevent the frequent violations of the legal rights of people with disabilities and their families. Very quickly, an online community was formed where experiences of life with disabilities were shared with particular focus on what the disability researcher Emil Falster has called system stress in times of austerity (Falster, 2019; 2021). Some of these testimonies were compiled and, supported by documentation for the error-ridden case work by municipal authorities, sent to relevant politicians and the Minister of Social Affairs (En Million Stemmer, 2020). When no political action was taken, the movement succeeded in gathering the 50,000 signatures needed to force the Danish Parliament to discuss and consider the organization’s proposal for a bill removing disability services from municipal jurisdiction (Folketinget, 2021; En Million Stemmer, 2021). Another set of testimonies was compiled and sent to members of parliament along with a catalogue of suggestions for improvements to the sector (En Million Stemmer, 2021; Kontaktgruppen, 2021). The debate and subsequent vote took place in spring 2021. The bill was not passed, but there was broad recognition across the political spectrum of the severity of the problems and of the need to prevent the frequent violations of and apparent disregard for the legal rights and protections of people with disabilities. The present situation, it was acknowledged, is characterized by errors, fortuity, families not receiving the statutory guidance, and a focus on economic considerations rather than the specific needs of families to people with disabilities. In other words, One Million Voices was recognized as fighting for a timely, fair, and just cause. There was likewise widespread acknowledgement of the huge gulf they identified between, on one hand, the spirit and letter of the laws framing services for and rights of people with disabilities, and on the other hand, the realities of everyday practice within municipal administrations. In March 2022, the auditors of public accounts, which in Denmark comprises a cross-party body of politicians appointed by the Danish Parliament, published a report reaching the same conclusions and thus supporting the case of One Million Voices. Nonetheless, as of February 2023, no action has yet been taken to address such issues. Only time will tell whether the movement will succeed in its fight for genuine and meaningful change.
How are we to understand these new forms of confrontational rather than consensus-seeking activism and the responses they have encountered within the public debate? What are the processes/discourses preventing this apparent political support resulting in corresponding action?
The subaltern on the rise?
The anthropologist Cheryl Mattingly (2013) has explored the task of parenting children with special needs as a form of ethics practised in everyday life. She views this ethics work as taking place in what she calls a moral laboratory where practical action is continuously adjusted and balanced to enable caregivers to create good lives for themselves and their children The African American mothers and grandmothers in Mattingly’s study focus on what can be achieved in the family context and in day-to–day practices. The parents active in the Danish One Million Voices movement can be seen as having come to a point where they conclude that such everyday ethics work is rendered impossible by the uncertainties of current reductions to welfare services. The many testimonies using the hashtag #enmillionstemmer on various social media forums show that, for these parents, ethics work has become a daily struggle for survival, with constant gruelling battles with local authorities. Consequently, they have decided to perform ethics work on a more public stage, comparable to what Runswick-Cole et al. (2018) call a disability commons. In Runswick-Cole et al.’s terms, this is a way of “un-mothering” the discourse and embedding it in political debate. Those One Million Voices testimonies from people with disabilities themselves can be seen as a way of de-diagnosing the language of disability and instead insisting on establishing such language as part of political discourse, using existential language to re-humanize and empower themselves (cf. Brinkmann, 2014). Challenging the silencing of their individual voices, they have formed a collective in One Million Voices in an attempt to make visible (and audible) that disability is not a marginal phenomenon, but something that affects large swathes of the population at some point in their lives, either directly or indirectly – hence the name One Million Voices.
Shaming and blaming
However, this public and political endeavour is performed in a discursive climate characterized by efforts to subalternate and silence the movement. People with disabilities have been publicly shamed, referred to as "cuckoos in the nest" who eat up municipal budgets, leaving nothing for other people in need (Holm, 2009; Gaardmand, 2011; Hoffmann-Hansen, 2019). This form of shaming has also affected parents of children with “special needs", with the struggles of such parents described as egotistical feathering of their own nests to the detriment of less resourceful parents (Boye, 2019; Schmidt, 2020). Such sentiments have been expressed by local and national politicians, municipal directors, and members of KL – Local Government Denmark, which is the association and interest organization of the 98 Danish municipalities. However, similar criticisms have also been made by primary and secondary school teachers faced with the complex and overwhelming task of including children with special needs in mainstream schools, and by representatives of parent organizations, who argue that children with special needs place an unreasonable burden on mainstream schools resulting in a negative impact on the progress of other students. This form of shaming and blaming functions through derogatory depictions of parents who fight for the rights of their children with various diagnoses or disabilities as part of a privileged elite. Parent-blaming is also seen among educational professionals, who themselves feel powerless and bewildered when confronted by children with special educational needs, whether in mainstream or special needs settings (Albertsen et al., 2015; Kjær, 2013; 2003). These media-borne political debates and agendas, as well as their everyday manifestations, are part of the sociocultural environment encountered by parents who fight for the rights of their children with "special needs" (see also Kjær, 2020).
Stigma in times of austerity
What might be the reasons for this shaming and stigmatization, bearing in mind that Denmark is a rich welfare state, and that most human beings are affected by disability in one way or another during their lifetime? The silence and apparent indifference when heart-breaking cases and systematic neglect are brought to the public’s attention might perhaps be explained in light of Spivak’s (1994) assertion that to be subaltern, the construction of the other must be crucial for the definition of the oppressor him/herself.
As illustrated, the current sociocultural discursive environment in Denmark in itself stigmatizes and problematizes people who need society’s help. Katherine Runswick-Cole et al. (2016) point out how, in political rhetoric, those who need help are contrasted with “hard working families” who are respectable, who do the right thing, and who are not a burden on society. They are constructed as the normal and natural way of being a family. Implicitly, families in need are defined as the opposite of hard-working - no matter how hard they work. The greater the intensity of parents’ attempts to fight for their children's rights in what in Britain has been called "the austerity state" (ibid.; cf. Kjær, 2021), the more they are subject to problematization and stigmatization. A welfare state logic characterized by rights, dignity, and trust is thus partly replaced by a logic of minimal social policy, characterized by suspicion, control, and stigmatization (with scarily many similarities to the Danish disability politics of the 1920s and 1930s (Koch, 1996)). Such a reduced welfare state is dependent on able-bodied “hard working families” that contribute to society and are rewarded with a position as morally right and “normal”. The consequence of what Imogen Tyler (2020) calls stigma power is that it deprives the marginalized of any right to dignity or to make demands because it holds the weak morally responsible for their weakness and casts suspicion on their struggles for more rights or better conditions. Tyler emphasizes that stigmatization always serves a purpose; in this case, the shaming of people with disabilities and their families legitimizes budget cuts. Furthermore, the parents fighting for their children, as well as the children and adults with disabilities themselves, are crucial for the construction of the good and normal citizen, simply because they deviate from the norm in ways that define the good citizen - and without accepting the associated stigma.
In recent years, the narrative of Denmark as representing the gold standard for disability policy and pedagogy has been used to silence resistance. The underlying assumption is that protesters must be unreasonable and unfair because all protest is framed, often implicitly, by this normalized and taken-for-granted narrative. If Denmark has the best welfare system in the world and the most highly qualified professionals, any criticism must be preposterous, rude, unfair etc. Thus, the discourse of the Danish gold standard functions as oppressive, silencing those who fight for better conditions.
Spivak argues that the subaltern cannot speak, as being muted is one of the defining characteristics of being discursively positioned as subaltern. In a historical perspective, the disability experience is one of being muted, othered, and subordinated, and of being defined by others – mostly framed by the medical gaze, as diagnostic discourse has never left the positioning of people with disabilities.
Diagnoses and diagnosing
Throughout the tumultuous history of the Danish welfare state, the tools to identify and diagnose non-typical children and thereby distinguish them from “normal” children have remained largely unable to incorporate or even blind to issues such as class, gender, and culture (Skrtic et al., 2021; Kragh, 2022: 63). Skrtic et al. (2021) document how diagnoses are part of a status hierarchy that is highly racialized and classed, so that low-status diagnoses are applied to low-status social groups. Over time, as diagnostic categories become stigmatized and are increasingly applied to poor and/or ethnic minority children, new diagnoses are given to children from social backgrounds with higher status (white and middle class), leaving the now low-status diagnoses to the underprivileged groups (ibid.; see Kragh, 2022 for Danish examples). Throughout the history of medicine, its diagnostic tools have focused exclusively on individuals in an effort to identify inherent pathological conditions, in effect inadvertently pathologizing specific social groups whose deprived circumstances can lead to socially unacceptable, non-normative behaviour, such as crime, prostitution etc.
This process of pathologization continues to this day and has great global authority, as seen, for instance, in the World Health Organization’s (WHO) International Classification of Diseases (ICD I-XI) and the Diagnostic and Statistical Manual of Mental Disorders (DSM 1-5), compiled by the American Psychiatric Association (Horowitz & Wakefield, 2007; Rosenberg, 2007). As argued by the psychologist Svend Brinkmann (2014), this has led not only to an increase in the number of persons given (neuro)psychiatric diagnoses, but also to a broader cultural tendency to interpret human suffering as a sign of disease. Consequently, only individual bodies are in focus, with no attention paid to societal or institutional circumstances and conditions. This prevents problems and suffering being addressed as signs of, for instance, social injustice, discrimination, or oppressive practices in schools or other institutional settings (Rose, 2013; Fraser, 2008). To this day, various disabling medical, (neuro)psychiatric diagnoses are unevenly distributed among children – geographically, socio-economically, ethnically – as are the resources allocated (Tegtmeyer, 2022; Ruge & Andersen, 2020; 2021).
Disability as a cultural trope - human-ness
The literary and critical disability scholar Michael Bérubé (2016) argues that the ways in which intellectual disabilities are understood in European welfare societies affect and transform how we read and decode narratives and texts in the broadest sense. His point is that representations of disability are crucial for the cultural constructions, definitions, and interpretations of what is considered human, and the trope of intellectual disability functions as a vehicle of ethical peril in the form of “narrative nervousness”. Disability most often represents the not-so-human, the less-than-human, or even the nonhuman (ibid.), even though, due to this lesser status, it also highlights the human condition in warped and unconventional ways, thus aestheticizing the perceived naivety of intellectual disability. Narrative representations of disability, Bérubé argues, are at the core of efforts to perceive what is human, even what is normal. As such, the construction of disability permeates the very fabric of how the human condition is perceived and addressed discursively in symbolic meaning-making processes that constitute social identities at an existential level.
The critical disability scholar Lennard J. Davis (1997) has analysed the mid-19th century emergence of the notion of normalcy as a discursive prerequisite for the construction of disability and the disabled body (cf. Kjær, 2017). The production of normalcy, according to Davis, depends upon designations of what is not normal, thus leaving for instance gendered, racialized, and classed others, as well as people with disabilities, at the margins, positioning them as a threat to, but at the same time as defining, the normal.
Regarding human beings that are categorized as “disabled” and labelled with various diagnoses, the aforementioned Spivak dictum gives a relevant context for analysis; such individuals can certainly be understood as subaltern in Spivak’s sense as normalcy is constructed through discourses of deviance, thus othering the “abnormal” or “disabled” (Becker, 1963; Foucault, 1988). The history of disability in Denmark, as in many other countries, is a history of being muted, othered, and excluded (de Beauvoir, 2011 (1949)). Defined and described by others, “the disabled” have been central to the social construction of normalcy, functioning as a vehicle for creating and mirroring “the normal” (Bérubé, 2016; Davis, 2006).
Perhaps the One Million Voices grassroots movement cannot be seen as exclusively representing the subaltern, but as those associated with, allied with and kin to the subaltern. The founders and front figures of the movement are well-educated, are legally savvy, and have academic competencies that are useful in political activism. However, these resources are also used against them, allowing political opponents to cast aspersions on the activists as being privileged middle-class parents. Within the One Million Voices community, such issues are not seen as a problem by less-privileged members; instead, the front figures are met with gratitude that the battle is being fought on behalf of everybody, including the less privileged. The subalternating processes related to the positionality and symbolic meaning of disability can be seen as only partially affecting those allies. Even those activists who themselves are defined as having disabilities could be framed, as at previous points in the history of the disability movement, as representing only the most “well-functioning” groups. In One Million Voices, this has not yet been an issue, perhaps because of the movement’s insistence on fighting for improvements to the general legal protections and social support for people affected by disability. Another reason could be the sharp focus on disability as a common denominator as opposed to the many diagnosis-specific organizations that exist. Discussions regarding which groups have the right and capacity to speak, and for whom, have for instance taken place in autism advocacy communities in both the USA (Broderick & Ne’eman, 2008) and Denmark (https://www.autismeungdom.dk/).
Conclusions and perspectives
As Runswick-Cole et al. mention, the neoliberal austerity state is highly preoccupied with distinguishing between “productive” and “non-productive” citizens. Social policy has tended to morph into labour market policy in this process (Kristensen, 2012). Here, people with disabilities are in an especially precarious position, with those who are potentially productive seen as corrigible, educable, and possibly employable, while others are considered incorrigible, non-educable, and unemployable. The underlying rationale is not rooted in eugenics but economics, paving the way for cost benefit-analyses regarding how to deal with these groups. Nevertheless, it is remarkable that the consequences are in many ways similar to those during the era of incarceration. Large institutions are reappearing based on arguments about cost-efficiency and rationalization. People with disabilities are not free to choose what kind of work they want to do, where they want to live, or with whom. Instead, they must be satisfied with what is on offer in their local municipality. The nature and the quality of these offers are defined exclusively by the local authorities, legitimized by national approval that they can decide what is euphemistically referred to as the “service level” based on economic considerations.
Such cases make it clear that disability cannot be understood and addressed in purely economic terms. On the contrary, doing so creates fundamental ethical problems because, as Martha Nussbaum (2007) has argued, many forms of disability are incompatible with a welfare state that is based on the idea of a reciprocal social contract, simply because not all people with disabilities can “earn” what they receive from society. Even if they contribute to society in every way they can, some remain dependent on help and care from others throughout their lives.
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