Blog

A new legislation for the Egyptian persons with disabilities: Hopes and fears

Author: Amany Soliman

On the 3rd of December 2017 and while the world was celebrating the International Day of Disability, The Egyptian parliament approved the bill of a new legislation that was described as a ‘historic law’ because it  would grant unprecedented facilitations, rights and more empowerment to the persons with disabilities (PWD) in the country. Earlier in April of the same year, The Egyptian President El Sisi announced that 2018 was going to be the year of persons with disability in Egypt.

According to the Egyptian constitution, in action since 2014, and specifically in article 81 “The state shall guarantee the health, economic, social, cultural, entertainment, sporting and education rights of dwarves and PWD. It would as well provide work opportunities and dedicate a certain percentage of these opportunities to them…The state guarantees their right to exercise their political rights.” In conformation to the mentioned article, the 2015 parliamentary elections obliged the proportional lists running in all constituencies to include at least eight candidates of PWD as a special one-time quota. The current Parliament of Egypt (2015-2020) has nine PWD MPs of which eight were elected in addition to one who was appointed by the President.

The law was drafted and proposed by one of the PWD Parliament elected members; the MP Dr Heba Hagrass who is an international disability consultant as well one of the most known Egyptian activists for the rights of PWD community. Hagrass is also a known researcher, member of the National Council of Women as well as the previous secretary general of the Egyptian National Council of PWD. The final draft was the result of combined efforts by the committee of “Social Solidarity, Family and PWD” in the Egyptian Parliament, of which Hagrass is a member, in addition to the government proposal presented by the ministry of Social Solidarity which is the executive authority, mainly, in charge of disability and PWD in Egypt. On the 26th of December 2017, the final version of the law was accepted after a vote in the parliament which gave the government a period of one year to implement all of its articles.

Hopes and gains

Hagrass describes the new law as comprehensive. Unlike the 1975 law of rehabilitation and employment (Law no.39/1975) that granted the PWD 5% of jobs in public sector institutions that has fifty employees or more; the new legislation tackles almost all issues related to the PWD such as housing, employment, education, health insurance, accessibility, representation, sports, transportation, tax exemption and even entertainment and tourism.

A human rights perspective rather than charity or philanthropic approach is obvious in this new law. The legislators made sure to assert, along the 55 articles of the law, that PWD are equal citizens to other Egyptians and they have long been ignored or discriminated against. Hence, even the articles where affirmative discrimination is practiced with certain quotas, exemptions or facilitations; it is considered a practice aiming to the integration and inclusion of the PWD in the Egyptian society as equal citizens who have rights and obligations and not a group or individuals deserving charity support.

The new law practically defines several terms related to the PWD. Article2 of the law defines who is a PWD, while article 3 gives detailed definitions to other key terms such as disability, social protection, dwarfism, empowerment, accessibility, disability-based bias and or discrimination, integration, facilitative arrangements, rehabilitation, PWD registration as well as engineering code. These definitions hopefully will make it easier for the legislators to issue the longed for by-laws to implement the law and will also help the government, municipalities and executive authorities to comply with the law and put it into action.

The opening statement of the law guaranteed that it would be applied equally on the foreign residents, on reciprocated basis, with no differentiation from Egyptian PWD citizens. This statement is very important in light of the influx of Syrian, Libyan, Iraqi, Yemeni and other refugees who flooded Egypt since 2011; in addition to other Sudanese, Palestinians and other African refugees who have resided in the country for decades.

Caregivers were not ignored while drafting and discussing the law thanks to the heavy involvement of the PWD community in the process. Most of the articles that focused on those who are accompanying the PWD were suggested, drafted and insisted on by the PWD parliament members or during the hearings where PWD from NGOs and civil society activists were present and explained in-depth that importance of the articles related to their caregivers. According to the new law, a caregiver of a 1st or 2nd degree to a PWD will be dismissed earlier “one paid hour” daily from his or her work in either public or private sector. Article 29 also enables caregivers an exemption of taxes, customs and registration fees to import, register and drive an equipped vehicle on behalf of the PWD that they are taking care of; a demand that has been long asked for especially from the blind and visually impaired Egyptians.

Access to education and accessibility at the educational facilities such as schools and universities are guaranteed by the new law which even bans schools from allocating students with disability in higher floors which would threaten their lives and safety. Several articles are stating the duties of the state towards educational empowering of PWD. By this law, the state is obliged to help the PWD with continuous education and literacy schooling if they are older than the age of regular schooling.

Affirmative discrimination and binding quotas are guaranteed by this law. PWD will be empowered with 5% of jobs in public and private sector, 5% of the state (subsided) housing units, 5% of school and university seats, 10% of  places in public universities’ dorms in addition to decrease in income tax and fees of several official services. The state will pay the PWD a welfare monthly salary which was first legalized in 2010 but the by-laws to be issued will detail the amount and the conditions on which it will be paid.

Skepticism and worries

One of the main fears of the PWD community in Egypt is the lack of information about their numbers and related statistics. The 2017 national census affirmed that 13.3% of the Egyptian population is PWD, which means that, with their families, they form the largest minority/special group in the country. A percentage that complies with the estimates claimed by the WHO for decades and no one in Egypt wanted to confirm until this year. The new law obliged the state to start a national process to register PWD of all categories as well as dwarves. The concerns are that with the new privileges guaranteed by this law, some would try to claim a disability that is not real and cause injustices to the PWD who should be the real beneficiaries by the new law. It would also be a back door for corruption or forgery. The PWDs would pay the price for such deeds and that would hinder the whole process of implementing the law that would make their lives better. The mechanism, of which the government is going to register the PWD and issue them a national PWD ID card, is not announced yet. However, it will be one of the milestones that would open the door for the effectiveness of the law or perhaps lead to problems that would jeopardize the whole process. Several articles of the law asserted the incrimination and punishment by imprisonment and financial fine in case someone falsely claimed his/her disability and equally in case  a person hides a PWD from official registration specially children or mentally disabled persons.

Regarding employment and PWD quota, the PWD community recalls the 39/1975 law mentioned above that is rarely applied and have been ignored and resisted for more than 40 years. The parliamentary members behind drafting and issuing the law themselves commented in several media appearances that their joy for this success won’t be complete until the finalizing of the by-laws, regulatory statutes and ministerial decrees which will put the articles into implementation.

For economic experts and financial analysts the skepticism was higher and widely expressed. The first obstacle a head of the new law can be seen in alignment with the economic and financial crisis that Egypt is suffering. The 2017 law includes many articles that need enormous cuts and redirections of the public expenditure. The articles regarding accessibility and changing the building code of millions of edifices in the country especially in places of public interest such as governmental offices, public authorities, universities, etc.., would be translated into billions of dollars whether for new establishments or alterations of the already existing ones, of which many are far from the PWD friendly code. Another major financial burden to the public treasury would result also from the article allowing a disabled employee to be paid a salary as well a 1st degree relative pension as well; a privilege that no other group of Egyptians legally ever enjoyed. The ability of the public treasury to double-pay hundreds of thousands of Egyptians monthly is highly doubted.

Legal concerns around the new law are significant as well. Several articles could be annulled due to contradiction with the Egyptian constitution or even frozen due to impossibility of implementation. The articles about banning and punishing those who make fun of PWD in media, films or public spaces is very controversial and raises questions about how and who would sue the accused and who would label a certain production as offensive. Another article regarding the freedom of marriage and starting a family would contradict with Islamic Shariaa and Egyptian law when it comes to licensing the persons with mental disability to get married. Actually the whole notion of quotas, financial exemptions, exceptions and affirmative discrimination is in fact a grand door for un-conistutionalize several articles of this promising law.

The cultural barrier also is a main concern. Goals such as integrated education and integrated workplaces would be met with resistance from the society that is not usually hostile to PWD yet might not welcome their inclusion in places they are not usually seen sharing. Despite that Egypt has launched two higher education faculties in Beni-Sueif and Zagazig (public universities) to graduate specialists in PWD studies and trained in issues of integration, it would take the country decades to provide enough specialized staff nevertheless train ordinary educators and work supervisors on how to integrate a PWD in a workplace or educational environment.

The Egyptian PWD community seems to appreciate the public and official interest in their issues and demands; however, they know how complicated and accumulated their problems are in a way that makes a small room for optimism. The PWD in Egypt has a long and tensed year ahead. This year, 2018, would be historically remembered as a successful and productive one, or may be remembered as the most disappointing after a major rise of hope and enthusiasm.

The social model of disability and framing disease III – Framing disease

Author: Berend Mul

This is the third post in a three-part series.

The previous post of this blog series listed some of the points of critique that have been formulated by various scholars on the social model of disability. This account was by no means exhaustive, but it does serve to illustrate that in a changed intellectual context new limits of the social model have surfaced. The post concluded with a brief explanation of one alternative to the social model – the critical realist perspective or interactional model on disability proposed by Tom Shakespeare. In my view, this ‘critical realist’ or interactional approach to the theoretical issue of disability (and impairment) is quite reminiscent of a concept developed by the acclaimed American historian of medicine Charles Rosenberg: ‘framing disease’, and closely related to that, ‘disease as frame’.

Disease, Rosenberg starts out with in his 1989 article, is an elusive and complex entity. It is, quoting his words at length: ‘at once a biological event, a generation-specific repertoire of verbal constructs reflecting medicine’s intellectual and institutional history, an aspect of and potential legitimation for public policy, a potentially defining element of social role, a section for cultural, and a structuring element in doctor/patient interactions’. In one way, obviously, disease is biological, i.e. pathological process that is little influenced by its socio-cultural context. Yet as the quote above makes clear, it is also a social phenomenon, and as a social phenomenon disease must be agreed upon and named through social process (Rosenberg 1989, pp. 1-2).

Rosenberg was not the first to recognise that disease is partly a socio-cultural phenomenon. In fact, his writing was not primarily a response to any medical model of disease, but instead was aimed at the social-constructionist approach of disease. According to Rosenberg, social-constructionist work had brought many valuable insights, but it also typically assumed a style of cultural criticism that had gone out of fashion in historiography. The social-constructionist approach overemphasised the extend of arbitrariness and the functionalist aims in the social processes of naming and agreeing on diseases. Whilst the social-constructionists are certainly right on the fact that disease is a social phenomenon and a social actor, it should be acknowledged that the social role of disease is limited by its biological character. According to Rosenberg, historians had not focussed enough on the connection between biological events, their perceptions by patients and practitioners, and collective efforts to make sense of these type of perceptions cognitively and in terms of policy. In addition to this. Finally, to say that disease is socially constructed is very close to tautology: all aspect of a person’s social identity – of which disease is part – is socially constructed (Rosenberg 1989, pp. 2-3, Rosenberg and Golden 1992, pp. xv-xvi).

The relationship between the medical profession and the state is an important topic in the social history of medicine. Quarantine Scarlet Fever. Ca. 1910. Credit: U.S. National Library of Medicine. https://www.nlm.nih.gov/exhibition/visualculture/introduction04.html

For these reasons, Rosenberg proposes to replace the concept of ‘construct’ with ‘frame’. Diseases are ‘socially framed’ in the process of the intellectual definition and diagnosis of disease, and the social and cultural meaning that are attached to diseases by physicians, patients and, for example, policy makers. How people make sense of disease depends on the intellectual repertoire available at the respective time and place. The biological characteristics of a disease too, shape, influence and put limits upon this social process of negotiating disease. Different diseases present different pictures to frame (Rosenberg 1989, Rosenberg and Golden 1992 p. xv). Once framed i.e. defined and understood as specific entities, diseases also offer a frame. They assume a role as social actors, becoming a factor in structuring social situations. This role as social actor is obvious when it comes to morally charged diagnoses in the past such as alcoholism, homosexuality, and AIDS (Rosenberg was writing in the 1980s), but heart disease too becomes part of an individual’s social identity (p. xviii).

Rosenberg’s proposal to study the way in which diseases were ‘framed’ in the past – as opposed to socially constructed – and how diseases operated as social actors throughout history, in important ways anticipates Shakespeare’s idea for an interactional model of disability. Both authors understand disease, respectively disability as complex social and biological phenomena and stress the importance of the interplay (or interaction) between these different ‘levels’ or aspects. I would not go so far as to categorise Rosenberg’s ideas as a critical realist approach to disease. This would require a more in-depth philosophical inquiry, which is not the purpose here nor is it within the scope of this website. This blog series should be seen as an attempt to bring both approaches from these different disciplines into one view, rather than as a systematic comparison.

Generalizing, it is probably fair to say that historiography as an academic discipline is not particularly known for the extensive philosophical pondering. In that regard, the theoretical work on this philosophical underpinning of their field by Shakespeare, Williams and others in disability studies could serve as an inspiration for historians of medicine.[1] Conversely, Rosenberg’s framing-approach found quick support and adaptation in research (see the chapters by different authors in Rosenberg and Golden 1992, for positive reception see e.g. London 1993), although, of course, that is not to say that Framing Disease did not receive any critical reviews (e.g. Conrad 1993).

Shakespeare’s Disability Rights and Wrongs was met with a mixed reception and at least one prominent scholar in the field of disability studies, Mike Oliver, wrote a scathing review on the book (Sheldon et al. 2007). The book’s reception is mirrored by Shakespeare’s controversial reputation. In contrast, Charles Rosenberg is considered an eminent historian within his discipline, and his work has been seminal to the history of medicine for decades (Linker 2013, pp. 513-14). After Rosenberg’s 1989 article, Framing Disease was published in 1992 containing fourteen chapters by different authors. Of course, while the question what disability is goes directly to the heart of disability studies as a field of research, the relationship between disease and the broad discipline of medical history is not quite so close. Yet, although a direct comparison between both scholars is moot (if only because of their generational difference), the immediate reception of their work is still noteworthy.

Closing words

 Perhaps the different reactions in disability studies and the history of medicine to, respectively, the interactional model and the framing disease-approach might at least in part be explained by the different intellectual histories and academic identities of both disciplines.

While the past has played a role in Western medicine in some shape virtually since its foundation in ancient Greece and Rome, the history of medicine as an independent academic discipline emerged in the first half of the twentieth century. From its inception, the discipline was closely aligned with medicine. The first generation of professional medical historians, of whom Erwin Temkin and Erwin Ackerknecht (Rosenberg’s mentor)  – both already came to consider diseases as culturally constructed entities! – had a background as physicians, and in the United States they were typically employed in medical faculties and institutions. They both approached the history of disease a crucial scientific part of medical education, on par with subjects like pathology and anatomy (Linker 2013, pp. 506-16). Indeed, their educational task lay primarily in teaching medical students – a task that is still a core component of the field (Jones et al. 2014). Although these historians’ understanding of disease went against the grain, from the start the discipline was closely aligned with the medical profession. In the decades after the Second World War successive generations of non-physician historians entered the field. But by and large, even these new social historians of medicine generally tried to balance social critique with academic objectivity, distancing themselves from a too overtly political or activist approach (Kudlick 2013 p. 542).

All this stands in marked contrast with the emergence of disability studies, which, as post I described, in the United States and Britain originated from disability activism – in the words of Catherine Kudlick, as a ‘blatant, unapologetic celebration of the relationship among politics, advocacy and history’ (p. 543). The social model of disability itself drew heavily from ideas developed within the UPIAS and in the U.S. the minority model was inspired by race and gender studies. As was noted, disability scholars typically hold a critical if not sometimes adversarial view of modern medicine and the medical profession. For obvious reasons, with exceptions medical history as an academic discipline maintains a different relation with medicine and the medical profession.

It therefore remains to be seen if the distance between disability studies and the history of medicine can be closed (see: Linker 2013; Kudlick 2013 makes the same point from her perspective as a disability scholar). Perhaps, though, the similarities between Shakespeare’s and Rosenberg’s theoretical work may offer an additional point of reference.

 

Works cited

Barnes, Colin, ‘Understanding the social model of disability. Past, present and future’ in Carol Thomas, Alan Roulstone Alan and Nick Watson (eds.) Routledge handbook of disability studies (New York, 2012): 24-38.

Braddock, David L. and Susan L. Parish, ‘An institutional history of disability’, in Gary L. Albrecht, Katherine Seelman and Michael Bury  (eds.) Handbook of disability studies (Thousand Oaks, 2001): 11-68.

Cole, Thomas R., ‘Framing disease: studies in cultural history. By Charles E. Rosenberg and Janet Golden’, The Journal of American History 80:2 (1993): 660-661.

Daddow, Oliver J., ‘No philosophy please, we’re historians’, Rethinking History 9:1 (2005): 105-109.

Daddow, Oliver J., ‘Still no philosophy please, we’re historians’, Rethinking History 9:4 (2005): 491-495.

Danermark, Berth and Lotta Coniavitis Gellerstedt, ‘Social justice: redistribution and recognition – a non-reductionist perspective on disability’, Disability & Society 19:4 (2004): 339-353.

Hamraie, Aimi, ‘Universal design and the problem of “post-disability” ideology’, Ideology, Design and Culture 8:3 (2016): 285-309.

Hughes, Bill and Kevin Paterson, ‘The social model of disability and the disappearing body: towards a sociology of impairment’, Disability & Society 12:3 (1997): 325-340.

Jardine, Nick, ‘Uses and abuses of anachronism in the history of the sciences’, History of science 38:3 (2000): 251-270.

Jardine, Nick, ‘Whigs and stories: Herbert Butterfield and the historiography of science’, History of Science 41:2 (2003): 125-140.

Jonker, Ed, ‘Van relativisme naar oordeelsvorming. Recente tendensen in de wetenschapsgeschiedschrijving’, Studium 1 (2011): 2-15.

Jones, David S., Jeremy A. Greene, Jacalyn Duffin and John Harley Warner, ‘Making the case of history in medical education’, Journal of the History of Medicine and Allied Sciences 70:4 (2014): 623-652.

Kudlick, Catherine, ‘Comment: on the borderland of medical and disability history’, Bulletin of the History of Medicine 87:4 (2013): 540-559.

Linker, Beth, ‘On the borderland of medical and disability history: A survey of the fields’. Bulletin of the History of Medicine 87:4 (2013): 499-535.

Livingston, Julie, ‘Comment: on the borderland of medical and disability history’, Bulletin of the History of Medicine 87:4 (2013): 560-564.

London, ‘Essay review: Charles E. Rosenberg and Janet Golden, Framing disease: studies in cultural history’, Medical History 37:1 (1993): 90-93.

Rosenberg, Charles E., ‘Disease in history: frames and framers’, The Milbanks Quarterly 67:supplement 1 (1989): 1-15.

Rosenberg, Charles, ‘Introduction Framing disease: illness, society, and history’ in Charles Ernest Rosenberg, Janet Golden (eds.) Framing disease: studies in cultural history (New Brunswick, 1992): xiii-xxvi.

Roulstone, Alan, Carol Thomas and Nick Watson, ‘The changing terrain of disability studies’ in Carol Thomas, Alan Roulstone Alan and Nick Watson (eds.) Routledge handbook of disability studies (New York, 2012): 16-23.

Shakespeare, Tom, Disability Rights and Wrongs (London and New York, 2006).

Shakespeare, Tom and Nicholas Watson, ‘The social model of disability: an outdated ideology?’ in Sharon N. Barnartt, Barbara M. Altman (eds.) Research in Social Science and Disability vol. 2: Exploring Theories and Expanding Methodologies: Where we are and where we need to go (Emerald Group Publishing Limited, 2001): 9-28.

Sheldon, Alison, Rannveig Traustadóttir, Peter Beresford, Kathy Boxall and Mike Oliver, ‘Disability Rights and Wrongs?’, Disability & Society (2007): 209-234.

Trigt, Paul van, ‘Historicizing the art of belonging. Disability, Acitivism and Social Science in the United Kingdom and the Nethrelands since the 1960s’. Unpublished conference paper based on Paul van Trigt, ‘Historicizing the Social Model: some preliminary thoughts about the history of disability, science and polities in postwar Britain and the Netherlands’ in Studien des Aachener Kempetenzzentrums für Wissenschaftgeschichte (Kassel, 2013).

Williams, Gareth, ‘Theorizing disability’ in Gary L. Albrecht, Katherine Seelman and Michael Bury  (eds.) Handbook of Disability Studies (Thousand Oaks, 2001): 123-144.

Williams, Simon J., ‘Is anybody there? Critical realism, chronic illness and the disability debate’, Sociology of Health & Illness 21:6 (1999): 797-819.

[1] In fact, this typically indifferent or aversive stance in relation to philosophy and theory of history in favour of a stronger adherence to empiricism in historiography is often even a conscious position (Daddow 2005a&b). In his introduction to Framing Disease Rosenberg himself does not associate his framing disease-approach to critical realism.

The social model of disability and framing disease II – Critiques on the social model of disability

Author: Berend Mul

This is the second post in a three-part series.

The social model of disability has been very successful within British and American disability studies as well as outside the academy. It has influenced national and international policies on disability in governmental and non-governmental organizations. Yet, notwithstanding these successes, the social model has faced various forms of critique in the last two decades. This critique is the subject of this second post in this blog series. The following inventory is by no means exhaustive, but it may point to the type of limitations of the traditional social model of disability in the twenty-first century. Both for the sake of transparency and to stay in line with the format of the medium of the weblog as such however, I will first briefly address my own thoughts on this subject.

When I originally encountered the social model of disability, my initial reaction was scepticism. It seemed a radical position to wholly separate bodily or mental impairment from its functional consequences and regard the later solely as the result of the way in which society and civilization have shaped the build environment and cultural attitudes. Impairment and disability instead seem intrinsically linked in complex ways. To me it seems that, as the British sociologist Tom Shakespeare (on whom more below) points out in his controversial 2006 monograph, “impairment is a necessary but not sufficient element in the disability relationship” (p. 45). If we accept this premise, to ignore one element (impairment) of this relationship and focus solely on the other (disability) can only serve to obscure both. To illustrate this coming from the field of medical history, to ignore a certain biological property of a disease, for example its potentially fatal outcome or its contagious nature, might make it difficult to explain the sociocultural attitudes towards said disease. The British philosopher and historian of science Nick Jardine has even introduced a theory of conceptual anachronism, to explore how it might be valuable to apply present-day categories to understand historical developments on the longue durée. In Jardines view, if historians limit their explanation of the past to the perspective and to the knowledge and categories that were available to the historical actors themselves, this also limits the potential of a critical and creative examination of the past. Only with knowledge ‘in hindsight’ – with knowledge external to the historical context – does it become possible to ask historical questions that actors in the past could not have thought off, and to recognise how earlier events related to later events and thus to chart longer term developments. Still, in order to avoid crude anachronisms and a ‘Whig’ interpretation of history, it remains crucial to pay close attention to the material, institutional, cultural context of the historical actors (Jardine, 2000; Jardine 2003; Jonker, p. 7).

Most critiques of the social model of disability have not come from historians of medicine however, but from medical sociologists and from scholars working in the field of disability studies itself. Firstly, early criticism arose from feminist scholars interested in disability, who argued that disability studies did not adequately theorise disability from a gendered perspective. In the 1990s similar arguments were put forth with regard to ethnicity, sexuality and class (Roulstone et al. 2012, p. 16). Perhaps noticing this trend, Bill Hughes and Kevin Paterson in an article published in 1997 voiced concern about the sharp delineation in the social model of disability between impairment and disability. The body as such, they argue, has become a key site of political and theoretical debates in sociology. In their view the conventional social model left sociologists of disability unprepared to join with this new ground of emancipatory identity politics, because it had largely ejected the body from disability discourse. It had separated impairment from disability and the body from culture, leaving the body and impairment (at least implicitly) defined in entirely a-historical, biological term – a body ‘devoid of history’. These separations, in Hugh and Paterson’s view, are untenable (Hugh and Paterson 1997, pp. 325-28). Their solution to this problem was to expand on the social model through post-structuralism and phenomenology. Through a post-structural approach impairment itself may be deconstructed and a phenomenological theory of impairment may take account of the fact that impairment and disability are both intertwined lived experiences (pp. 325-35).

Somewhat in line with Hughes and Paterson’s view, what may be defined as a postmodern perspective on the social model emerged. Indeed, this postmodern perspective (or rather, perhaps inherently to ‘postmodernity’, these perspectives) rests on a typical rejection of “grand theories” and encompassing conceptual dualisms such as the distinction between impairment and disability. Postmodern approaches have criticised the first wave social model of disability that emerged in the 1970s for its materialist emphasis on economic and environmental barriers, and instead focus on the way in which disability is created through culture, language and discourse. The sociologist Shakespeare is considered by some as an exponent of this ‘cultural turn’ (Barnes 2012, pp. 29-33, Williams 2001, p. 3). In recent years, scholars working with critical disability theory have put forth the argument that many current efforts towards improving accessibility in the build environment reinforce discrimination against disabled people. Alleviating or eliminating disability (defined as functional limitation) through architecture and design, in this view, equals eliminating ‘”the possibility of discovering alternative ways of being in the world, to foreclose the possibility of recognizing and valuing interdependence.”’ (quoted in: Hamraie 2016, p. 301). To do so is to reinforce the ideology of ‘ableism’; the idea that disability represents a deviation from the norm, and that life without disability is preferable to living with disability (Hamraie 2016, pp. 286-7). Thus, in a sense this line of thinking turns the social model of disability on its head. It acknowledges the central idea to the social model of disability that disability is caused by social or external factors to the individual, but instead concludes that disability as such should be preserved on the social level too.

Above I already referred to Shakespeare’s 2006 monograph, Disability Rights and Wrongs. In the first part of this book Shakespeare argues for the wholesale dismissal and replacement of the British social model of disability, on the grounds that it has been politically potent but ‘has largely failed to produce good empirical research, because it relies on an overly narrow and flawed conception of disability’ (p. 12). To discuss Shakespeare’s full critique here would fall outside the scope of this blog post. Of relevance here is his attack on the strict biological impairment/social disability dichotomy in the social model of disability. Shakespeare brings forth three points as to why the two cannot be strictly separated. Firstly, impairment may not be a sufficient cause of disability, but it is a necessary one. Secondly impairment itself is often, but not always, caused by social arrangements. Thirdly, not only are impairments frequently caused by social arrangements, what counts as an impairment is also a social judgement. Impairment is not solely a biological given but is also culturally laden. In Shakespeare’s view impairment and disability are not dichotomous, but instead disability is a complex interaction between biological, cultural and socio-political factors which are difficult to differentiate with precision (Shakespeare 2006, pp. 27-30; see also: Shakespeare and Watson 2001).

To replace the social model of disability with an alternative conception that can account for these complex interactions, Shakespeare draws on critical realism to propose an ‘interactional model of disability’. At the core of critical realism stands the distinction between ontology and epistemology. Critical realism, in response to (extreme) social constructionism, (re)affirms the acceptance of an external reality and the existence of objects independent of our knowledge of them. However, according to proponents it avoids reductionism by focussing on the interplay between – in the context of disability – biological reality and social-cultural interaction. (Williams 1999, p. 805-810, see also Danermark and Gellerstedt 2004). Following this, disability should then be understood as an interaction between individual (biological as well as psychological) and social (cultural as well as environmental) levels or factors (Shakespeare 2006, pp. 43-44) – hence the term ‘interactional model’.

The social model of disability and framing disease I – The social model of disability

Author: Berend Mul

This is the first post in a three-part series.

The social model of disability – an outsider’s introduction

I should start this blog series with a short background introduction. In the 2016-17 academic year I was affiliated with the Rethinking Disability research project as a student-assistant, and in this (former) capacity I was provided with the opportunity to write a post for the blog of this website. Before my position as an assistant I had not been familiar with disability studies, and today too I still very much consider myself an outsider to this field. Having been asked to write a short piece for this website, I therefore decided to approach the topic from an ‘outsiders’ point of view’ – that is from the perspective of my own specialisation as a research master student in the history of medicine and knowledge.

The topic of this three-part blog series is a concept that seems quite ubiquitous in the field of disability studies: the social model of disability. Drawing from existing literature, in this this first post I will provide a (very) brief introduction of the social model of disability and its (British) origins. The second post in this series will discuss several types of critiques that have been levelled against the social model. Much, if not all of this, will be familiar information to readers working and studying in the field of disability studies. In the third and final part of this blog then, I will introduce a concept from the history of medicine, framing disease. I will suggest that the difference between the social model approach and framing approach’ partly reflect the different intellectual histories of both disciplines.

The social model of disability has been called ‘constitutive’ to disability studies (Roulstone et al. 2012, p. 16) and the field’s ‘guiding framework’ (Williams 2001, p. 4), its ‘big idea’, and adherence to it a ‘litmus test’ for new disability scholars (Shakespeare 2006, pp. 8 and 26). Today the social model is most closely associated with the influential British field of disability studies (Shakespeare 2006), but it has been equated with the ‘minority group model’ in the United States (Williams 2001, p. 4, Linker 2013, p. 500, 519). In the Northern Countries (Denmark, Norway and Sweden, plus Iceland and Finland) a ‘Nordic relational model’ of disability was developed in the 1960s. This relational model shares important similarities with the social model, but also differs from it on some critical issues (Shakespeare 2006, p. 23). For constraints of space and time I will not go further into the Nordic model of disability, and instead refer to the research by Anna Derksen on the Rethinking Disability project. Admittedly then this blog has a strong Anglo-Saxon focus. For the way in which national context may influence the conceptualisation of disability, see e.g. Paul van Trigt 2013.

A “theatre” of medicine and surgery. Watercolour by Johann Heinrich Ramberg, ca. 1800, by Johann Heinrich Ramberg. Credit: Wellcome Collection (https://wellcomecollection.org/works/tjnetmwu).

Briefly put, the social model of disability can be classified as a social constructionist theory. Its adherents propose that disability should be understood as a socially constructed phenomenon, as opposed to a biological given. Within the model, disability is typically approached as a form of exclusion and social oppression that is imposed by society on people with physical or mental impairments. Thus, a crucial distinction is made between impairment as a biological phenomenon on the level of the individual, and disability as a socially constructed phenomenon on the level of social interaction (Hugh and Paterson 1997, pp. 325-26; Barnes 2012, p. 25, Linker 2013, p. 519). Some scholars have even argued that disability is wholly caused by ‘external’ factors to the individual, i.e. strictly independent from any inherent bodily or mental pathology or impairment. Thus, any relationship between impairment and disability as such cannot be assumed (e.g. Livingston 2013, p. 563; Hamraie 2016, pp. 286-87). Others have stated that impairment and disability are somehow interconnected but maintain that an analytical separation between the two is still preferable because a social constructionist understanding of disability enables a stronger emancipatory and identity-based politics for people with disabilities (Sheldon et al. 2007, p. 210 and 230-34).

The social model of disability originated from ideas which were first developed by several groups of British and American disability activists in the 1970s, in opposition to what these activists understood as the ‘medical model’ of disability. In contrast to the social model, the medical model is not so much a consciously developed and adopted theoretical framework but rather a designative term coined by disability scholars and activists to describe the way modern medicine understands and interacts with disability. Within the medical model, critics argued and continue to argue, modern medicine and society at large view disability as a direct result of biological impairment. Disability is thus treated as an individual problem to be prevented or alleviated through medical intervention and rehabilitation. In fact, the social model is often defined in opposition to the medical model and it has been pointed out by critics and proponents alike that disability scholars generally assume a critical if not self-consciously polemical and antagonistic stance against medicine (e.g. Hughes and Paterson 1997; Braddock and Parish 2001, p. 2; Williams 2001, pp.3-6; Livingston 2013, pp. 560-1).

In Britain the activist group Union of the Physically Impaired against Segregation (UPIAS) played a significant role in the political and intellectual development of this reversal of disability from a biological, medical phenomenon into a socially constructed phenomenon and form of social oppression (Shakespeare and Watson 2001, p. 16; Shakespeare 2006, p. 14-6; Barnes 2012, p. 25-6). It is important to note that the term ‘social model’ itself is an academic term and was only retrospectively introduced by Mike Oliver in 1981 to describe these activist ideas (Barnes 2012, pp. 24-9). Particularly in the United States, scholars have also treated disability as a critical analytical category analogue to race, gender and class to strengthen disability studies’ activist research agenda. Hence the phrase ‘minority model’ was coined to distinguish between the differences of emphasis between both approaches (Linker 2013, pp. 519 and 543, Shakespeare and Watson 2001, p. 16).

Since the 1980s, the social model of disability has not only strongly influenced the academic field of disability studies, but through its influence in the academy it has also seen great societal and political success in (re)shaping national and international policies on disability in governmental and non-governmental organizations (Shakespeare and Watson 2001, pp. 16-7). Despite (or perhaps rather because of) this strong position of influence the social model has also come under various forms of critique in the last two decades. This critique will be the subject of the next post.

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.

(more…)

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]

(more…)

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.

(more…)