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A language for equal opportunities: easy-to-read and intellectual disability in Sweden (Part II)

Author: Anna Derksen

“The individual rights of the retarded person as a human being”

In 1965, after the public discussions and protests of disability activist organizations had seriously questioned the legitimacy of exclusion and special institutions, Sweden established a National Disability Commission as a first signal that politicians took the demands seriously. But the country also became a stage for international discussions on the issue. In June 1967, the International League of Societies for the Mentally Handicapped organized a symposium on “Legislative Aspects of Mental Retardation” in Stockholm. Next to practical issues like accommodation, education and rehabilitation, one topic was central:

“the basic rights of the mentally retarded, not only from the standpoint of their collective rights and those of their families, but also from that of the individual rights of the retarded person as a human being.”

This proved to be a first step towards change, as Sweden adopted a new law on the care for persons with intellectual disabilities, which included the first official acknowledgement that persons with ID had the right to the same opportunities and living conditions as others.

‘Culture for All’ (1976) included summaries in lättläst, discussed accessibility and promoted easy-to-read books.

Disability began to emerge as a distinct policy area in which politicians, administration and interest groups closely cooperated. The creation of lättläst falls into this context. Sommaren med Monika was an experiment. Guidelines did not yet exist, and neither did research on how it was received. And another problem emerged as more and more books, from Bernard Shaw’s Pygmalion to Alexandre Dumas’ The Count of Monte Cristo and even poetry were translated: They were often a rather dull read, gathering dust on the shelves of public libraries while the intended readers had no access or even knowledge about them.

A key to equal opportunities?

The National Disability Commission addressed this issue in its final report Culture for All (1976):

“The market for such books is huge and the needs are insufficiently catered for. Many who would benefit from easy-to-read books do not know they exist. It is therefore important to provide more information about them. We believe that mentally disabled people and others with reading difficulties must have access to significantly more books.”

The publication of lättläst literature under the aegis of the National Board for Education continued, was refined and broadened – but the focus was still on works of a certain literary canon, meant to be read at home and contributed little to actual cultural participation.

During the discussions and events of the International Year of Disabled Persons in 1981, persons with ID, interestingly, hardly played a role at all. The development of lättläst instead seems to have happened on a different stream than the general formulation of disability policies, which were influenced by the much more established collaboration with persons with physical and sensorial disabilities.

Despite this detachment from key actors of the Swedish disability movement, the1980s saw rapid changes for persons with ID. Prompted by parents’ and advocacy groups as well as public officials, the newspaper 8 SIDOR (8 pages) and the state-funded foundation Lättläst-stiftelsen were created. In 1997, the foundation changed its name to the Centre for Lättläst (today the Swedish Agency for Accessible Media) and broadened its services considerably, recognizing that the need for easily accessible information and books was more widespread than initially thought. Today, their target group includes persons with ID just as much as elderly, immigrants and other people with reading difficulties. Or anyone else who wants access to easy and quick information for that matter: lättläst versions of election programs are becoming more popular than the originals.

The Centre for Lättläst published books, the newspaper 8 SIDOR, coordinated reading representatives and offered a translation service for public authorities, organizations and companies (picture: regionvasterbotten.se).

Conclusion

Since its inception, the concept of lättläst has come a long way. What started in the 1960s as an idealistic but somewhat immature idea to bring persons with ID into contact with literature has become an established tool to improve social contacts as much as accessibility to information and culture for a diverse group of people.

I would argue that the decision to grant persons with ID social rights in the 1960s/70s, including the right to culture, was a radical break with previous policies, but in tune with contemporary imaginations of the welfare state. To become a truly democratic and solidary society, the participation of every citizen was imperative – and for this, an understanding of what citizenship entailed. The welfare state was a social project conceptualized by policymakers, which made the care, but also the integration of marginalized groups a distinctly political task. Support organizations and persons with ID played an important part. They demanded equal opportunities and created visibility through their own clubs and gatherings, effectively undermining arguments that tried to justify their social exclusion.

Two actors at seemingly opposite ends, the Swedish state as an ‘engineer of society’ and persons with ID as passive recipients of care, were brought closer together by advocacy as well as political rationale. This short history of lättläst shows that a common ground was found in the idea of simplified language as a door-opener to culture, information and a mutual exchange of opinions – an idea that enjoys growing popularity to this day.

 

Links and further readings:

  • 8 Sidor (= 8 Pages, newspaper in easy-to-read).
  • Bohman, Ulla (2017): Easy-to-read in Sweden, in: Bettina M. Bock, Ulla Fix and Daisy Lange (Eds.), „Leichte Sprache“ im Spiegel theoretischer und angewandter Forschung, Berlin: Frank&Timme Verlag.
  • Bundeszentrale für politische Bildung (2014): Leichte und Einfache Sprache, in: Aus Politik und Zeitgeschichte (APUZ), Vol. 9-11.
  • Ehrenberg-Sundin, Barbro (2004): Speech given to 600 high-level Mexican public servants at the launching plain language conference Lenguaje ciudadano on the 5th of October 2004, in: The Plain Language Action and Information Network.
  • International League of Societies for the Mentally Handicapped (1967): Symposium “Legislative Aspects of Mental Retardation“, Conclusions, Stockholm.
  • Myndigheten för tillgängliga medier (= Swedish Agency for Accessible Media).
  • Statens Offentliga Utredningar (1976): Kultur åt alla (= Culture for All), SOU 1976:20.
  • Tronbacke, Bror Ingemar (1993): The Publishing of Easy-to-Read in Sweden. Lecture given at National Library of Australia, Canberra.
  • Tronbacke, Bror Ingemar (1997): Easy-to-Read – An Important Part of Reading Promotion and in the Fight Against Illiteracy, in: IFLA Journal Vol 23, Issue 3, 185-191.

 

 

 

A language for equal opportunities: easy-to-read and intellectual disability in Sweden (Part I)

Author: Anna Derksen

Newspapers, books and football stars

Making the built environment accessible has almost become a matter of course. When dealing with information and language, however, we still have a long way to go: Probably most of us have struggled with the complex jargon of public authorities. But also newspapers, books or texts in a museum exhibition can pose a challenge for persons with intellectual disabilities (ID), illiteracy, dementia or little language skills. A tool intended to facilitate participation in society and to realize what the UNESCO calls a fundamental ‘right to know’ is the concept of easy-to-read, a simplifying language with short sentences, easy vocabulary and large typeface. Despite its potentials, however, easy-to-read divides opinions: There are not a few who criticize the concept for ruining linguistic beauty and for being overly paternalistic.

I was therefore surprised how frequently I crossed paths with the Swedish version of easy-to-read, lättläst, during an archival research trip to Stockholm on websites, in a bookstore that dedicated a whole shelf to lättläst literature, among others advertising the biography of football star Zlatan Ibrahimović, and even in the dusty boxes of the archives. I began to look for more examples of easy-to-read in Swedish disability history, realizing that evidence of it dated as far back as the 1960s. As most literature accredits the origins of easy-to-read to British and American self-advocacy groups of the 1990s, like the People First Movement, my curiosity was piqued.

What are the origins of lättläst, and what can this history tell us about persons with ID in the Swedish society – long before the concept started to take hold internationally?

From left to right: UN Convention on the Rights of Persons with Disabilities; David Lagercrantz/Zlatan Ibrahimović: Jag är Zlatan; museum guide of Moderna Museet; Swedish Agency for Accessible Media

Outsiders in the welfare state

The very first lättläst book was published in 1968 – not by a disability organization, but the Swedish National Board for Education. Instead of creating a completely new book, the choice fell on Per Anders Fogelström’s popular novel Sommaren med Monika (Summer with Monika, probably most (in)famous for Ingmar Bergman’s salacious film adaption). The time of release was no coincidence: This was the time of the ‘Swedish miracle’ with economic prosperity and a generous welfare system built upon values like equality, solidarity and social justice. But while society as a whole was thriving, it became obvious that not everyone benefitted equally from this development – particularly those who were not in work, as was often the case for persons with disabilities.

Why, then, was it a governmental institution and not a grassroots initiative that made the production of lättläst literature its mission? To answer this question, we have to delve deeper into the historical situation of persons with disabilities in Sweden. Since 1956, Swedish disability policies were part of the Social Benefits Act that depicted persons with disabilities less as citizens with equal rights than in need of assistance. For persons with ID, segregating accommodation in large care institutions was the norm; an instrument of social control, for which the state assumed primary responsibility. Their living situations stood in stark contrast to the progressive image of the universal welfare state, an issue that parents and the press questioned and investigated, with reverberating effects: Around 1960, a whole wave of critical media coverage about the social neglect of persons with ID led to heated discussions throughout the Nordic countries and forced policymakers to rethink their stance.

Self-advocacy “in the backyard of the People’s Home”

A leading actor was the Swedish Parents’ Association for Mentally Retarded Children, an organization that worked towards better living conditions in the institutions, tried to reshape public opinion and organized integrative workshops or leisure activities. But life in the institutions also changed from within, as young people with ID began to organize their own clubs and meetings. By doing so, they emancipated themselves from the well-intentioned, but often patronizing events prepared by their parents and the personnel in institutional care. No less importantly, these initiatives also challenged the very basis on which politicians justified segregation of persons with ID in special institutions in the first place – by showing that they could, and would, represent their own interests. This tied directly into the debates that were already in full swing at the political level.

In the discussion on how equal rights could be realized for persons with ID, communication and language crystallized as crucial points: to know one’s own rights, to form opinions and make informed decisions. The state could no longer ignore this large group living, as the disability activist Vilhelm Ekensteen put it, “in the backyard of the People’s Home”.

***

Part II of this blog will continue to trace the history of persons with ID in the Swedish state and explores how the concept of lättläst has been used as a tool for broadening their circle of social belonging.

Student Blog VII: The Dutch freedom of education and the implementation of human rights

Author: Borek Slangen

In 1917 the Dutch parliament agreed, after almost a century of political struggle, to give religious schools the same possibility to receive state funding as public schools. A hundred years later, almost 70 percent of Dutch children go to faith-based schools, including catholic, protestant and Islamic schools, but also nonreligious Montessori and Dalton schools.  The freedom of education, included in the Dutch constitution since 1920, gives parents and children the right to choose a school based on their own conviction and forms the foundation of the Dutch school system. This freedom, however, comes at a cost, as it crosses the state’s ability to conform to international educational norms on human rights.

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Student Blog VI: The gates of the EEC: human rights and the Iberian authoritarian regimes

Author: Simon Beentjes

The date of the adoption of  the Universal Declaration of Human Rights is clear: December 10th, 1948. However, the history of its utilization in domains like politics, international law and social activism is way vaguer. In 2010, Samuel Moyn shook up the debate about the history of human rights with his groundbreaking ‘The Last Utopia’. In his book, he directs attention to a very limited political engagement with human rights before the late 1970s.[1] Though his argument is very convincing, historians have the task to look at examples that refute his argument in order to identify possible shortcomings. In this blog, I will try to highlight a possible shortcoming of Moyns work by showing how the Dutch Catholic party used human rights to escape Cold War bipolarity in the late 1960s. (more…)

Student Blog V: The Language of Human Rights: Blair, Kosovo and the Long Term Impact of Human Rights Rhetoric

Author: Ross Francis

In his work ‘The Last Utopia’, Samuel Moyn argues that a key reason for the breakthrough being placed within the 1970s is because, inter alia, the human rights movement began to transcend and the national framework. This was related to the concept of state sovereignty, and its steady erosion as the preeminent principle of the international order. Thus, appeals to human rights came to mean more than simply the protection of minorities or the right to self-government (the anticolonial movement), but became what can be seen as the rights of all individuals to an acceptable minimum of protection that transcends state borders.[1]

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Student Blog IV: The Convention on the Elimination of All Forms of Discrimination as implemented by the Dutch in the late 1960s

Author: Lyke Veen 

When discussing human rights the Dutch government has always had an interesting position. After the Second World War the attitude on human rights changed in the international community. It was in this period that the Dutch began to play a more prominent role concerning human rights. In the 1960s the Dutch started to position themselves as ‘Guiding Nation’ on human rights and over the course of the century they strengthened this position.[I] In the 1970s human rights formed the cornerstone of the Dutch International Affairs policy. While human rights were strongly represented in the International Affairs policy, the Internal Affairs policy lacked any substantial use of human rights. International human rights conventions, which the Dutch often had helped to develop in  the United Nations institutions, were ratified. However, the conventions were only used by lawyers, but hardly by Dutch policymakers.

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Student Blog III: UNICEF and their use of the concept ‘human rights’

Author: Suzanne van Basten

The concept human rights is nowadays commonly used to strive for a certain level of development by global organisations and governments. This also applies to development aid organisation UNICEF, which is frequently using the term to define their goals. However, it is striking that not more than twenty years ago the concept was not used at all by UNICEF. As part of the research seminar ‘History of Human Rights’ I have studied the introduction and subsequent use of the concept human rights within UNICEF by questioning why and when UNICEF has chosen the concept human rights to define their mission. In particular I engaged in research on the effect of the Children’s Right treaty of 1989 on the introduction of the concept human rights by UNICEF. In order to answer this question I looked into the annual reports of UNICEF from the period 1980 till 2000 with a special focus on the Children’s Right treaty of 1989. (more…)

Student Blog II: LGBT human rights in Indonesia

Author: Nina Littel

From the 2000’s onwards, provincial bylaws have been implemented in Indonesia that have criminalized certain types of same-sexual practices. This was followed in 2006 by a similar nation-wide law. LGBT human rights organization OutRight Action International has described this process as ‘creeping criminalization’, through which those who engage in same-sexual activities were put in an increasingly precarious situation.[i] These regulations went together with hostile anti-LGBT rhetoric from government officials and religious bodies, inspiring religious vigilante groups to repeatedly attack LGBT events, from 2010 onwards. Often, local police failed to protect LGBT activists, despite the fact that homosexuality and transgenderism in itself were not illegal in Indonesia, and the constitution guaranteed both the right to organize, and freedom of speech.[ii]

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Student Blog I: The History of Human Rights: Oliver Tambo and the Anti-apartheid Struggle

Author: Yoram Carboex

As part of my RMa degree in Political Culture and National Identities I followed the course History of Human Rights last semester. In this course, given by Dr. Paul van Trigt, we set out to gain an understanding of human rights from a historical perspective.

What became especially clear in the course was the prominent position of one particular academic in the historiographical tradition of human rights: Yale historian Samuel Moyn. In his provocative book The Last Utopia: Human Rights in History Moyn seeks to challenge the prevalent notion of human rights as deeply rooted in history. According to Moyn, we can only speak of human rights in the way we currently understand them since the late 1970’s. It was at this moment that human rights – as a social movement based on an utopian idealism – came into existence. For Moyn human rights is then an utopian ideology based on internationalism; human rights as superseding the previously dominant notion of state sovereignty. Consequently, from this period onwards, the appeal to supranational institutions and their legal protections became essential. (more…)

Beyond the last utopia? Introduction to a student blog series about the history of human rights

Author: Paul van Trigt

Human rights have  since their ‘birth’ been essentially contested concepts. Recently, they have become subject of intense debates in historiography. Sam Moyn’s provocative book The Last Utopia (2010) made in particular clear how important it is to investigate precisely which meaning human rights have been given in a particular context. Moyn argues that it is only since the 1970s that human rights have been defined as liberal freedoms based on individual dignity and protected by international law. Moyn therefore rejects long-term histories of human rights traced back e.g. to the French Revolution. Moreover, he relativizes the importance of human rights in the aftermath of the Second World War and during processes of decolonization. Of course the Universal Declaration of Human Rights was issued in 1948 and the concept has since then been used, but not yet on the scale and with the same meaning as it has had since the 1970s. (more…)