How new MDMA-assisted psychotherapy for PTSD can rethink the way we understand and treat PTSD

Author: Wessel de Cock

It’s just after 6 in the evening and the Erasmus University is slowly getting empty, when a group of about 10 students and PhD’s from psychology, neurobiology and even economics gather in a small lecture hall for a meeting of the Psychedelic Science Collective Rotterdam about ‘MDMA-assisted psychotherapy for PTSD’. The Psychedelic Science Collective Rotterdam is one of several organizations in the Netherlands, as for instance the Amsterdam Psychedelic Research Association – APRA, that since a few years have started to organize events to ‘inform people about the research into psychedelics and their application in medicine’, as well as lobby for the ‘destigmatization of psychedelic substance’. Starting out from the working of psychedelic drugs in for instance psychotherapy, they rethink how we can understand mental disorders as PTSD and make the already existing treatments more effective.

Whereas the Dutch Psychedelic Science Collectives are just beginning to organize, in the United States the Multidisciplinary Association for Psychedelic Studies America or MAPS has since the 1980s lobbied for awareness of the potential beneficial use of psychedelics in psychotherapy and funded trials with psychedelic substances as MDMA (3,4-Methylenedioxymethamphetamine) in psychotherapy. One of the first clinical trials that MAPS funded was a Spanish study on MDMA-assisted psychotherapy for victims of sexual abuse who suffered from PTSD that began in 2000 but ended two years later due to political pressure.[1] Since large pharmaceutical companies remain thus far sceptical and arguably wary of changing political views and regulations regarding the use of psychedelics, MAPS has entirely funded the only three therapeutic phase-two trials that have currently been conducted.[2]

As one of the in Rotterdam present PhD-students fittingly explains the reason that MDMA was chosen for these trials was not just because it, more so then other psychedelics, helps creating a bound of trust between patient and psychiatrist. An important factor was indeed that ‘MDMA in America at least, simply has not the same negative connotations as LSD as it is not related to counter-culture or hippies in any way’.[3] That made the trials politically less sensitive, as the 2016 approval of phase 3 trials by the FDA De Food and Drug Administration proves.[4] The expectations are that these clinical trials in the United States, Canada and Israel will be concluded somewhere in 2021 and that the first MDMA-assisted psychotherapy will be available in Europe within a few years as well.[5]

Picture from the Multidisciplinary Association for Psychedelic Studies TNS

Whereas research on psychedelic substances as MDMA in psychiatry already started in the 1950s, this became politically controversial and was eventually banned in the early 1970s in reaction to the recreation use of especially LSD.[6] Since the late 1990s, MDMA-assisted psychotherapy is however in growing interest again due to a number of reasons. First, the Decade of the Brain that was launched by president Bush in the 1990s, stimulated a renewed scientific and political interest in the neurobiological functioning of the brain in mental disorders. Secondly, the fact that ‘major pharmaceutical companies that formerly pursued aggressive and very expensive research in this field have withdrawn because of the high rate of failure to find medications’, there is a need for new treatment options for the rising costs of mental healthcare and thirdly there is a growing frustration among psychiatrists and psychologist with the lack of success of existing treatment options.[7]

The convincing success of the initial trials that were conducted with MDMA-assisted psychotherapy further contribute to the current widespread scientific and public optimism in the possibilities that psychedelics offer.[8] Considering that the trials that have been conducted thus far almost always focussed on group of individuals with ‘chronic PTSD’, so-called because other forms of therapy and medication (both pharmacotherapies and psychotherapies) did not help, adds to the optimism on MDMA-assisted therapy.[9] Studies of for instance Mithoefer (2011, 2013, 2018) showed that after MDMA-assisted psychotherapy 83% of the participants stopped showing any symptoms of PTSD and the Phase II trial of MAPS in Canada that were concluded in 2016, showed as well that 68% of the participants no longer had any of the PTSD related symptoms.[10] Follow-up studies after 3.5 years additionally showed that these results were enduring over a longer period of time as well.[11]

            ‘Eliminating symptoms entirely would be a huge breakthrough, as PSTD is notoriously difficult to treat. With PTSD the traumatic memory of the incident replays like a tape loop in the patient’s mind. MDMA doesn’t eliminate the traumatic memory, but it takes away the emotional impact so that the memory no longer controls a person’

– Mark Haden, professor at the University of British Columbia’s School of Population and Public Health. [13]


What makes the MDMA assisted psychotherapy revolutionary as well is that the ‘assistance’ of MDMA allows for a ‘mainly non-directive, patient-driven method by emphasizing empathetic presence and listening and non-directive communication’.[14] This primarily comes from the fact that MDMA causes a ‘detachment from the feeling of imminent threat’, an ‘noticeable inherent feeling of safety’ and ‘accelerated emotional processing’, while at the same time it still allows people to ‘access and confront traumatic memories’. The current MAPS manual on MDMA-assisted psychotherapy only takes into account two to three sessions of 6 to 8 hours, usually 2 to 6 weeks apart, where MDMA is used in assistance, while the total treatment period ‘usually’ includes around 15 sessions. This makes it significant shorter then usually therapeutic treatments of PTSD and possibly, over time, less-expensive as well.[15] With two psychologists, a male and female, being present on ‘either side of the patient’, the aim of these sessions is for the ‘the contents of the trauma to erupt spontaneously’, while the patient is able to reflect and verbalize their ‘experience’ in later sessions or when the ‘peak effects of MDMA’ go away. Although the dose of MDMA differentiates between studies, the MAPS manual considers 125 mg as a ‘full dose’, but other doses that have been used in trials are sometimes as ‘low’ as 30 mg, making the doses in trials significantly less than the 200 to 250 mg MDMA usage that is common in party circuit.

Picture from the handout of MAPS

Rethinking PTSD and its treatment through the appliance of MDMA.

While personal experiences with both MDMA as therapy shape at least an part of the meeting of the Psychedelic Collective, the central focus was a recent qualitative study on the effects of the MDMA-assistant treatment that was conducted in 2019 by Barone, W., Beck, J., Mitsunaga-Whitten et al.[16] The clinical trials that were described above used the so-called Clinician Administered PTSD Scale (CAPS-IV) to measure the outcomes in how much the frequency and intensity of PTSD symptoms were reduced, the authors of this qualitative study argue that this alone ‘cannot measure changes in essential areas that supplant a diagnosis of PTSD or arise alongside symptoms’. The 19 people with chronical PTSD that they interviewed took part in the phase 2 clinical trial that found ‘significant and durable reductions in PTSD symptoms that persist more than one year following the treatment’. Besides symptom reduction however, these interviews showed how the participants described a further improvement on ‘self-awareness’, ‘relationships and social skills’ and ‘openness to continued therapy’.

This is especially interesting for it gives new insights in how these individuals with PTSD perceive the effects, beyond the direct symptoms, of PTSD. All participants note that the treatment effectively ‘altered their perception of self and brought about more self-compassion’. One participant described how the MDMA-assistance allowed him to ‘see yourself like you can read a book and see everything that you stand for and kind of analyse your own self, your own thought and reasoning’. Another participant noted that the treatment helped to ‘communicate what I’m going through’ while before she was ‘never able to communicate with anybody about any of the issues’. Another participant said that the MDMA let her fell as if ‘I was capable and safe of tackling the issues. Whereas before I feared those thoughts and I tried to avoid them at all times, and avoid things that reminded me of those thoughts, I think it allowed me to feel safe in my space’. Finally, a participant notes that the MDMA-assistance helped making her or him more open to therapy in general. ‘I had a lot of defences going up into the therapies that I had previous to the MDMA, and it made accomplishing any breakthroughs impossible. With MDMA, it broke this hard, outer shell that was up that kept me from being able to connect with the therapies I was going through.’

Model of how PTSD contributes in psychotherapy

Whereas the study concludes that a ‘common factor among participants was the belief that this treatment provided them healing beyond what they could find in traditional modalities’, these trials in itself could be used to reflect on the ‘traditional’ treatments of PTSD as well. As one of the participants in the meeting notes, ‘the point is as well that this shows what kinds of effects the participants report, are these effects the result of the appliance of MDMA or are these simply things that are useful for people with PTSD?’ The fact that the participants in this qualitative study focus so much on how the MDMA-assisted therapy helped them ‘strengthen their self-awareness and self-acceptance’ and especially helped them improve their functioning in social activities and relationships, might as well mean that these are simply important factors people with PTSD struggle with beyond the direct, already well known, symptoms. This means that the results of these MDMA-assisted psychotherapy trials could not just help rethink what exactly PTSD is beyond its direct well-known symptoms, but also revaluate existing therapies and see if ‘there are different ways then the MDMA-assisted psychotherapy to help people with PTSD get this self-awareness and improved functioning in social relationships’.



Kanye West’s bipolar disorder as a ‘Superpower’ and the role of celebrities in the rethinking of mental disorders

 Author: Wessel de Cock

‘See, that’s my third person. That’s my bipolar shit [..] that’s my superpower, ain’t no disability, I am a superhero! I am a superhero!’, rapped the American rapper Kanye West on the song ‘Yikes’, from his 2018 album ‘Ye’.[1] As arguably the most famous artist of the past decade, Kanye his statements immediately became subject to a fierce debate in both traditional media as on social media online. On the one hand there were critics that argued that Kanye his statements ‘glamorized or mischaracterized’ mental disorders and could ‘trivialize the seriousness of the condition’ while also preventing other people with similar disorders from seeking treatment. Others, however, praised the song and Kanye’s subsequent statements as a ‘reflection of his neurodiversity’.[2] Initially it were mostly scientific experts as therapists, psychiatrists, and neuroscientists who gave their opinion on Kanye’s statements, but eventually, especially on online media, people who were diagnosed with bipolar disorder themselves began writing in either critique or support of Kanye’s revelations.

That the public conversation after the release of an album of Kanye West was not so much about the music, but more about his person is not entirely surprising for people who have been following the controversial Chicago-born music producer. With the release of My Beautiful Dark Twisted Fantasy in 2010, the scandal with the VMA-awards and Taylor Swift was still fresh in many people’s memory and during the release of the Life of Pablo in 2016, Kanye made headlines with his announcement of support for Donald Trump. The complete focus on Kanye his widely published involuntary hospitalization in a psychiatric clinic two years earlier, following the release of ‘Ye’ in Juli 2018, was, however, something unprecedented.[3] It was very much fuelled by Kanye himself, who placed ‘I hate being Bipolar, it’s Awesome’ on the front of the album cover, and on social media drew additionally attention to his diagnosis with a series of tweets in which he explained that ‘no one would ever choose to end up in a mental hospital and diagnosed with a mental disorder but god chose me to publicly go through this journey and it is beautiful’.[4] In an interview with the popular talk show host, Dave Letterman he went into an even deeper account of his experience by saying that ‘they handcuffed’ and ‘drugged’ him and ‘put him on a bed separated from everyone he knew’.

The album cover of Ye (2018).

In the same interview with Letterman, he further specified that his diagnosis let him ‘experience first-hand how people who have mental health issues get written off by society’. According to him, people ‘cut your sentences off halfway’,  say ‘don’t listen to him cause he’s crazy’ and ‘what you say doesn’t mean as much.’[5] On his experience with the disorder itself, he noted that he felt ‘hyper-paranoid’ and noting that ‘everything can feel as though it’s a “conspiracy”’.[6] At the same time, he explained his creativity as the direct result of his disorder. ‘If you want these crazy ideas and these crazy stages, this crazy music, and this crazy way of thinking, there’s a chance it might come from a crazy person’.

In an excellent article for the Daily Beast, Tanya Basu, problematized the widespread notion in society that ‘creativity stems from mental illness’.[7] As she notes, Kanye had long subscribed to the idea that creativity is directly linked to mental illness, even before being ‘officially’ diagnosed with bipolar disorder in 2018. On his 2016 album The Life of Pablo he rapped: ‘name one genius that ain’t crazy, I’ve been outta my mind a long time’ and ‘you ain’t never seen nothing crazier than This n***a when he is off his Lexapro’. As Batu notes, historians and anthropologists have showed that this ‘myth of the tortured genius’ goes down deep in history from ‘Vincent Van Gogh to Ernest Hemingway to Amy Winehouse’ and neuroscientist and psychologists as well have disproven this notion in empirical studies, as an overview study that was published in Clinical Psychology Review in 2010 shows.[8] Whereas Basu rightly praises Kanye for ‘taking ownership of his bipolar disorder and making it his superpower’, she notes that the ‘tricky aspect’ is that he does this by ‘embracing the tortured genius’, effectively taking over a societal stigma.[9]

Although Kanye had, probably in anticipation of the critique that would follow, already defended his statements by arguing that people should ‘stop looking at my tweets as rants and start looking at them as therapy testimonials’, a discussion broke out anyway. While American online media mostly invited psychologists, therapists and scientists to explain what exactly was a bipolar disorder, which ‘types’ it could take and how expressed in Kanye’s behavior, more interestingly, many people who were diagnosed with a bipolar disorder took, or received, a platform to give their opinion on Kanye’s statements regarding bipolar disorder.

In an interview with the Huffington Post Katie Conibear, 33, said she likes it a lot to see ‘someone so high profile speak openly and honestly about their experience’.[10] Noting that she found it ‘terrifying to start talking about some of the more severe sides of the condition, like psychosis and mania’, she hopes that Kanye’s reveal will ‘sparks more in-depth discussion on what bipolar is’. Although Eki Igbinoba, 22, from London and also diagnosed with bipolar, was more critical on Kanye’s past ‘nonsense’, she at the same time praised that he as a ‘straight black man opens up in such a vulnerable way is necessary and I’m proud of him, especially considering mental health isn’t really associated with rappers/hip hop artists’.[11] Another positive reaction came from Mike Vosters, who noted that he hoped that Kanye ‘calling bipolar a superpower’ would ‘change the entire connotation of the word’. He explained how an earlier, unreleased song by Kanye that mentioned bipolar disorders, helped him deal with his own bipolar diagnosis:

‘I found that song (Gossip Flies, 2008) around the same time I was diagnosed, and it became somewhat of a life anthem. It was audio therapy. It made me feel like everything was going to be okay when I was down, and like I could take over the world when I was up. It made being bipolar seem not so bad, and made Kanye West a role model because he was proof of what someone with bipolar could accomplish’.[12]

At the same time, other people with a bipolar diagnosis were way more critical, arguing that Kanye gave a too one-sided, positive, view of the disorder that was creating risks for others with the same disorder. One person on Twitter, unclear if diagnosed or not, noted that ‘Kanye’s platform glorifying bipolar disorder as a “superpower” and potentially discouraging folks from seeking treatment and help is not good’.[13] Another Twitter user argued that ‘bipolar disorder isn’t the quirky personality trait of a genius. If you’re suffering from symptoms of bipolar disorder (mania/depression), seek help’. Another interesting account comes from Kiana Fitzgerald, diagnosed with bipolar as well, who explains in her blog titled ‘I’m bipolar and finally done with Kanye West’, that ‘the day after Kanye dropped Ye, I woke up knowing I would have to go into work and explain how I felt about having the same diagnosis as the most controversial figure in contemporary pop culture’.[14]

Similarly, in a podcast of Psych Central, a social network for people with mental illnesses, several people who were diagnosed with bipolar disorder were very critical on Kanye suggestion that ‘taking medicines would reduce his creativity’.[15] ‘Gabe’ for instance noted that for Kanye, as a ‘multi-millionaire platinum-selling rapper, maybe this is the best decision. But the majority of the people hearing his message are not famous multi-platinum selling artists’. Noting that since bipolar disorders have a ‘15% death rate by suicide’, he further argues that ‘not getting the correct treatment you are raising your odds of dying by suicide’. On a personal account, ‘Michelle’, noted that she recognized Kanye’s fear of becoming less creative through taking medicine:

‘It was a huge reason about why I didn’t want to take meds when I was younger when I was around 18 or 19 starting meds in college. I would say that I’m taking these meds and I was an art major and it was ruining my artwork and I couldn’t do my artwork anymore because of the meds or I couldn’t play lacrosse good anymore because of the meds.’

What these comments show is that both the people speaking out positively as negatively, focus on Kanye West’s status as one of the most prominent celebrities and his ability to introduce new perspectives and shape the public debate on mental disorders.

Historically, the role of celebrities in the shaping of the debate about mental health is something quite new. Whereas it was first mostly scientific experts and policymakers determining the public conceptions of mental health and disorders, from the 1980s these have been increasingly challenged by advocacy organizations calling for self-representation. The scientific experience was set against personal experience. Now in the digital 21st century where celebrities and so-called ‘influencers’ are increasingly shaping the public sphere, their accounts of personal experience with mental health problems are perhaps increasingly able to become seen as ‘representative’ of the personal experience of a whole ‘group’ of diagnosed individuals with all their specific problems. As Kiana Fitzgerald’s feared, it is likely that when she tells people about her bipolar disorder one of the first things they think about is Kanye West.

The influence of celebrities on the public debate on mental health is also increasingly highlighted by researchers. As Allister Nelson notes in a study in Frontier in Health Communication, Kanye West ‘making public his bipolar disorder diagnosis set off a media maelstrom’, and drew attention to, and thereby largely shaped, the World Mental Health Day of 2018.[16] Nelson’s research on the impact of the personal accounts of almost 160 celebrities who posted on that year’s World Mental Health Day shows that ‘opinion leaders diagnosed with bipolar disorder are effectively shifting the dialogue surrounding mental health to one of stigma reduction and acceptance’.[17]



Call for Blogposts

Call for blogposts: A Public Global History of the International Year of Disabled Persons (1981)

Since 2015 the European Research Council-funded project Rethinking Disability (  has undertaken the first study of the far-reaching implications of the International Year of Disabled Persons (IYDP), a landmark event organized by the United Nations in 1981, which appears to have gone virtually unrecognized in scholarship. Its hypothesis is that the International Year, together with its counterpart, the International Decade of Disabled Persons (1982-1993) was the most significant watershed in the modern history of disability, which placed this issue into a global context.

The research by the Rethinking Disability team has covered several countries all over the world, but there are still a lot of countries, regions, organizations and communities about which we know too little. For this reason, we are launching a crowdsourcing initiative. We are hereby asking members of the public to contribute to this initiative by writing a blogpost, conducting or giving an interview, sharing relevant documents and visual materials with us or in any other way you see fit. We invite contributions also in languages other than English in which case we will offer individual arrangements for the translation.

Please send your contributions and queries to the email address:

Moreover, you can also reach us via twitter @ERC_Rethinking where we will also post updates about this initiative which will be launched on 2 December 2019 in the International Institute for Social History in Amsterdam during an event marking the eve of the International Day of Persons with Disabilities.

Disability and the Ambivalence of Charity: Public Fundraising Galas in Sweden and Norway in the 1960s

“They have strong stomachs, these politicians, making the public believe that charity is a good substitute for their own betrayal. […] At the latest bazaar they bought soft linen towels for 4.50 kr per piece, hand-made by the intellectually disabled. A bargain! Cheap labor! If I had the time and money, I would take the City of Oslo to the European Court of Justice.”

Author: Anna Derksen

With statements like the above, the Norwegian journalist and filmmaker Arne Skouen set an avalanche in motion. In the two article series “Those Who Fall Outside” and Those Who Betray Them (1965) and Situation of the Feeble-Minded (1968), both published by newspaper Dagbladet, as well as the much-noticed book Justice for the Handicapped (1966), Skouen gave a scathing judgment of the care system and social treatment of persons with intellectual and mental disabilities in Norway: They were met with either aversion or paternalistic benevolence, and if they could get access to public services at all, were accommodated in isolated and badly equipped institutions. Instead of living up to their responsibility and changing this situation, politicians would rather promote private donations and bazaars – a situation not only he found intolerable.

What form did these charity and fundraising campaigns for persons with disabilities take, at a time when the Nordic welfare states prospered? And what was so ambivalent about them that disability activists like Arne Skouen even threatened to take public authorities to court? A look at two such campaigns in the 1960s gives us some answers to these questions.


Arne Skouen with daughter Synne in 1965. Image: Norsk biografisk leksikon/NTB Scanpix



One of the first Nordic donation shows with disability as a topic was the Swedish MS-aktionen in 1959. Initiated by Neuroförbundet, an organization for persons with multiple sclerosis and other neurological disorders, the goal was to build an independent care home as an alternative to public institutions. The campaign was broadcast on public radio and it was not only financially a success, but also drew largely positive feedback both from the audience and the disability community.


MS-aktionen in 1959 was the first public charity campaign for persons with disabilities on Swedish public radio. One year later De Vanföras Väl organized Handikapp 60, here with a street collection in Sundsvall. Images: Neurologiskt Handikappades Riksförbunds arkiv, Swedish National Archive: SE/RA/730646/L/L 3/1; Norrlandsbild/Tommy Wiberg, Sundsvalls museum.


Much more critical were the reactions to the following disability campaign in 1965. Röda fädern, the Red Feather, was the first Nordic charity gala that made it to public television. Again the idea came from a Swedish disability organization, and again it was about housing. A few years before, Sven-Olof Brattgård, a doctor and wheelchair user, had developed the concept of the so-called Fokus houses, accessible and centrally located apartments where persons with disabilities could live independently with support of an in-house service (boendeservice). Together with Lions Club, the Fokus foundation approached public broadcaster SVT with the idea for a fundraising show. Röda fjädern took place in 1965, hosted by the popular TV show presenter Lennart Hyland and the journalist Lis Asklund, who a few years before had caused quite a stir among the Swedish public with an investigative radio documentation on disabled children in institutions. Röda fjädern took the audience in a storm, with over one million people watching and 11 (today ca. 110) million SEK being donated, enough to build not just one, but fourteen Fokus houses.

But not everyone was a wholehearted supporter. Especially critical was Vilhelm Ekensteen, himself a wheelchair user, visually impaired, and author of the influential book In the Backyard of the People’s Home (1968), who like Arne Skouen in Norway openly rejected donations, as “charity has never made an attempt to tear down the walls around the handicapped. […] The issue of equality never arises, when everything is set straight and the best is done, the handicapped are supposed to be good and show satisfaction, and that’s it.”

Other critics even turned against the concept of the Fokus houses themselves, seeing them as just another form of segregation. Mats Denkert from the Swedish Association for Mobility Impaired (DHR) wrote in the organization’s magazine: “DHR’s advocacy efforts against institutions has begun to yield results, and now the Fokus houses are making a one-off measure that solves all needs within the house and thus establishes new institutions.”


Journalist Lis Asklund and TV presenter Lennart Hyland hosted the Red Feather campaign on Swedish television in 1965. Images: Hallands Nyheter; Sveriges Radio; Lions Club.


Only one year after Röda fjädern, in 1966, Norway held its first televised disability gala. Standing behind the campaign was Erling Stordahl, a blind singer known for organizing outdoor sports events for persons with disabilities. After the success of Ridderrennet, a ski competition for visually impaired people, he dreamed of opening a Disability Health Sports Centre at Beitostølen that combined physical rehabilitation with nature experiences – convinced that persons with disabilities had a right to an active social life, including culture, sports and the outdoors.

Again, the campaign was a great success: 8,6 million (today ca. 96 million) NOK were raised and Beitostølen was opened by crown prince Harald in 1970. But critique followed suit, peaking in Skouen’s article series Situation of the Feeble-Minded in 1968 in which he condemned the campaign as a mere begging for money that completely ignored discussions on rights and political responsibility. Stordahl was at the center of his disapproval: “Imagine if a man like Erling Stordahl had set his mind on [justice]. Disability is so diverse, he himself is blind. He is also eloquent and known throughout the country. What a giant he could have become in the struggle for unfortunate fellow citizens, for their dignity, for their statutory rights, for their integration into the Norwegian social policy debate. He has instead chosen to be Norway’s most virtuous beggar.”


Erling Stordahl initiated the first disability gala on Norwegian television in 1966, raising money for the construction of  Beitostølen Health Sports Centre. Images: Wikimedia Commons; NRK.


Such arguments did not stop Erling Stordahl and others from organizing similar campaigns, either on television or more traditionally on the streets. They did, however, add an important dimension to the relationship between disability and society. Who was responsible for the care and well-being of persons with disabilities? How could their equal rights be ensured, and what was the role of the public in this? These questions continue to be relevant even today.

But despite the important critique from the disability community, the charity campaigns in the 1960s also had their merits. The idea behind the Fokus houses and Stordahl’s use of the Norwegian passion for sports and the outdoors resonated well with the public, while bringing positive and informative images of disability directly into people’s living rooms. Contrary to what has often been criticized about donation galas in other countries like the United States, persons with disabilities were seldom depicted as suffering and in dire need of help. The collected money was less intended as a substitute for welfare than as a means for realizing novel and innovative projects.

Donation galas remain popular in the Nordic countries. Good examples are TV-aksjonen in Norway and Musikhjälpen in Sweden, two shows that repeatedly have disability as a topic. Unlike the 1960s, however, they are no longer collecting for the benefit of local disability organizations but have shifted their support to poor and underdeveloped countries, with a strong focus on equality and rights.



Disabled Sámi in Norway. A double minority between special education and indigenous rights

Author: Anna Derksen

In Norway the early 1980s marked a period of upheaval as various minority groups protested for political recognition. Between 1979 and 1982 the Sámi, an indigenous people from the northern parts of Norway, Sweden, Finland and the Russian Kola peninsula, tried to block the construction of a hydroelectric power plant at the river Alta in Northern Norway with mass demonstrations and hunger strikes. Although the protest itself was unsuccessful, it catapulted the requests of Sámi activists – indigenous environmental rights, land ownership and protection of language and culture – into the public and political spotlight. At the same time, another major protest was staged in 1981 by persons with disabilities, who used the celebration of the United Nations International Year of Disabled Persons as an opportunity to demand equality and participation in the welfare society.

Despite this simultaneity of events, however, one group curiously remained in the shadows: Sámi with disabilities. What did it mean to be a disabled Sámi in 1970s and 1980s Norway, a time in which both the disability movement and Sámi rights activism received hitherto unknown attention?


Sápmi, the territory of the Sámi in Norway, Sweden, Finland and Russia. Source: Wikimedia Commons

Norwegianization, special education and Sámi with disabilities

For centuries the Sámi had been the target of dominating measures by Nordic elites, from Christian missionary work to appropriation of land and programs of cultural assimilation. Extensive policies of ‘Norwegianization’ were adopted by the government in the mid-19th century. In an attempt to turn the supposedly primitive Sámi into Norwegian citizens, Sámi families had to give up the semi-nomadic lifestyle that followed the migration patterns of the reindeer, Sámi children were sent to boarding schools, and public use of the native language became suppressed. Until well into the 20th century the Sámi were regarded as inferior, categorized for example in the 1930 census together with “Kvens [a Finnish ethnic and linguistic minority], Citizens of other countries, the Blind, the Deaf-Mute, the Mentally Deficient, and the Mentally Ill”. The 1950 census no longer inquired after disabilities, but the Sámi remained grouped with foreign nationals and thus legally separated from other Norwegians – a status that was eventually changed, stimulated by the Alta protest, with the 1988 Amendment to the Constitution and the 1989 Sámi Act.


Special schools, health centers or support services were scarce in the north of Norway and seldom offered services in the Sámi language. Illustration from the Nordic seminar report “Disabled persons among national minorities and societies with limited resources”, 1981 (1982), p. 67.

For Sámi with disabilities the policy of Norwegianization had particular consequences. One was the lack of suitable services in the scarcely populated northern part of the country: While about 30.000 Sámi lived in Norway in 1980, no statistics were being kept about the prevalence of disabilities among this group, and little was known about indigenous views and approaches towards disabled persons. Recent studies by social scientist Line Melbøe suggest a more metaphorical understanding – a person with an intellectual disability could for instance be called somebody who ‘walks with a different rhythm than others’. In encounters with Norwegian doctors and authorities this could lead to severe communication problems, as Sámi were often unfamiliar with diagnostic terminology and care practices.

Another consequence was the absorption into the Norwegian system of care, rehabilitation and special education. For example, when blind or visually impaired Sámi children reached school age, their parents (like parents of non-indigenous children) could only choose between two public schools for the blind: Huseby blindeinstitutt in Oslo or Dalen blindeskole (from 1975 Tambartun blindeskole) in Trondheim, both hundreds of kilometers away. And while Sámi children since 1969 had a right to education in their native language, disabled Sámi at special schools still had to adapt to a purely Norwegian environment.

Disabled Sámi and the International Year of Disabled Persons 1981

During the International Year of Disabled Persons in 1981 the Nordic countries conducted a joint seminar on the topic of “Disabled persons among national minorities and societies with limited resources” in which the situation of Norwegian Sámi was discussed alongside that of Greenlanders, Åland islanders, and Swedish-speaking Finns. Bjørn Hansen, a representative of the Norwegian disability organization FFO (Funksjonshemmedes Fellesorganisasjon), gave a surprisingly self-critical perspective on the social status of disabled Sámi, denouncing the existing practices of care and special education as particularly harmful for personal development: “Because of the cultural differences, Sámi children will more easily be perceived as severely disabled in a Norwegian / Swedish / Finnish institution than in a Sámi one. As disabled persons in a foreign environment they will more easily develop a negative self-image.” Hansen expressed the concern that mental health issues among the Sámi were often a direct result of social prejudices and the policies of Norwegianization: “Being a Sámi brings with it great possibilities to also become labeled as disabled. Encounters with the majority population can have such a strong impact for many that they become disabled for life.”


The Huseby Educational Centre for the Visually Impaired in Oslo, here in 1953, also admitted Sámi children. In 1981 it started an initiative to develop a Sámi Braille alphabet in cooperation with the Nordic Sámi Institute and the Sámi Education Council. Photo credit: Oslo Museum, Leif Ørnelund.

In the end, however, results were few, with disabled Sámi not even mentioned in the final report of the International Year of Disabled Persons in Norway. Many important issues were ignored or at least not pursued further. Sámi identity was almost exclusively linked to the issue of language, cutting short discussions of accessibility to public services, the concerns of Sámi with other physical or intellectual disabilities, or prevalent social prejudices – against the Sámi as well as against disability in general.

Apart from the discussions at the Nordic seminar, only a single project about the double minority situation of Sámi with disabilities is documented for the 1980s. Again this concerned special education: As material for Sámi with disabilities did not yet exist in their native language, the Nordic Sámi Institute in Kautokeino, the Sámi Education Council and Huseby blindeinstitutt in Oslo developed special braille letters for the Northern Sámi dialect (á, č, đ, ŋ, š, ŧ and ž) that could be added to the Norwegian braille alphabet. It was hoped that books translated into Sámi braille would enable visually impaired Sámi to finally make use of their right to education in their native tongue. While even today this is still far from a reality, at least a number of books has been published in Sámi using the special braille letters, with the Norwegian and Sámi cultural authorities aiming for more.

The Sámi braille alphabet developed in the 1980s. It is based on Norwegian (Scandinavian) braille with added letters used in the Northern Sámi dialect. Image by Tambartun blindeskole.


Concluding remarks

It took both public authorities and scholars a long time to turn their attention to the particular situation of Sámi with disabilities. It seems that Norwegianization policies and the country’s system of special education have led to a strict separation of Sámi and disability identities, despite the simultaneous protests of their respective rights movements. Melbøe et al (2016) come to a similar conclusion, pointing towards a “stronger emphasis on the battle for collective rights as a Sámi, compared with the battle for individual rights for people experiencing disability.” It is thus not only due to the scarcity of historical sources that these intersections are easily overlooked. While gender, class or race have become cherished cross-categories in the writing of disability histories, we should remind ourselves that there are more perspectives to consider – but also, that not all fit into popular narratives of emancipation and empowerment.


Integrating Disability in History Education

Author: Helen Snelson

One of the many wonderful things about EUROCLIO (the European network of history educators) is the opportunity it provides to meet and learn from other people with teaching and research interests and perspectives that challenge and inspire better practice. Thus it was, during a project meeting in EUROCLIO’s office in The Hague in 2017, when Dr Monika Baar came to share with us her work on the history of people with disabilities and the ‘Rethinking Disability Project’[i]. Much of the content of her presentation was new to me. For example, I did not know about the protests triggered by the UN’s intention to make 1981 the ‘Year for disabled people’. Nor had I heard of the 1990 Capitol Crawl that helped to bring about the US 1990 Disability Act, which has influenced legislative approaches beyond the USA. Search for an image of this event and you will see the powerful expression of physically disabled people crawling up the steps of the Washington Capitol building to powerfully demonstrate how they were excluded, literally and metaphorically, from US democracy. Monika stressed to us the importance of all people being able to know about their past. Why had I not seen this before? How had I been letting down my students, by not enabling them to learn about the historical context to our attitudes towards disability today? Were they ignorant of how hard the road has been towards our relatively positive attitudes? What of students with a disability, was the past relevant to part of their identity to be absent from my classroom?

The 2010 Equality Act passed by the UK Parliament places on all teachers a duty to nurture the development of a society in which equality and human rights are deeply rooted. For history teachers this poses the question: ‘Does our history curriculum reflect the diverse pasts of all people in society?’ and ‘Do all the children sitting in front of us have the chance to learn about people like themselves?’ And yet, the school history curriculum is so full already, so how could any more content be shoe-horned into it?

With food for much thought from Monika and various vague ideas, I went straight back to my inspiring colleague and friend Ruth Lingard back in York and we put aside some time to think and do some reading. As a result of this thinking and reading, we developed a lesson about the past of people with disabilities that included a timeline enabling students to identify change and continuity over time and the factors that shaped the change.[ii]

As a result of our reading we also discovered that disability and people with disabilities in the past were ‘hidden in plain sight’. For example, there is a famous picture of the 16th century English king, Henry VIII. It is of Henry and his family. However, there are two other people in the picture: Will Somers and Jane the Fool. Both of them were people with learning disabilities who were part of the Royal Household able to make the king forget his worries and to ‘speak truth to power in a way that other courtiers could not. Once we started looking, we found other people present in stories already told in history lessons, for example, Benjamin Lay, the Quaker campaigner for the abolition of transatlantic slavery who was also a dwarf. As a result, we have developed a format called a ‘slot in’. A slot-in is a knowledge rich worksheet about a character, or event, or place, which adds diversity to a topic and which can easily become part of existing lessons[iii].

We recommend these principled actions for history teachers working with disability:

  • Take time to gain knowledge and make connections.
  • Be prepared to admit to ignorance and ask for help from people who are knowledgeable about how to represent people with disabilities.
  • Make a review of existing teaching materials looking for where you can ‘slot in’ the disabled past despite the lack of time available due to an already very crowded curriculum.
  • Say something rather than nothing, enabling the voices of past people with disabilities to be heard.

This last point refers to a conversation we had over social media with Eugene Grant, a writer and campaigner with dwarfism, about the importance of positive role models in classrooms for people with disability. Grant wrote in the UK political journal ‘The New Statesman’[iv] in April 2018 about how he was 31 years’ old before he encountered the positive role model of Benjamin Lay, whereas, as a teenager he was faced with the appalling character with dwarfism ‘Mini-Me’ in the film ‘Austin Powers.’ We had mistakenly thought it might be better to downplay Lay’s dwarfism, but Grant encouraged us to put Lay’s dwarfism central to our ‘slot-in’.

Two years later and we have written an article about our work for the UK Historical Association’s journal ‘Teaching History’[v] and presented at two Historical Association conferences. We have produced resources for students in English schools including:

  • a timeline activity tracing changes in attitudes to disability in relation to changes in ideas about being human,
  • a timeline activity specifically focused on attitudes to mental health over time,
  • sources as evidence activities, including using records from the archives of the pioneering Retreat asylum opened by Quakers in the 18th century,
  • slot-ins on various people and places important to the story of disability and society,
  • and, of course, teacher guides for all of these.

These are freely available in downloadable format via the blog and we would be delighted if colleagues were to find them useful and to improve them.


[ii] This activities are all described and explained in an article for the UK Historical Association’s journal for secondary school history teachers. You can find it in volume 173 of Teaching History from the website:

[iii] At this link you can find the slot-ins we have developed so far:

[iv] Grant, E. (2018) ‘Abolitionist, activist, dwarf – we all need role models like Benjamin Lay’

[v] ‘Teaching History, 173: Opening Doors’ edition, Historical Association, London, UK (2018) – access via

Blog Post: War without hate and peace without development: disability and minefields in North West Egypt

Author: Amany Soliman

As the world observed the Annual Day of Landmine Victims  the last 4th of April, Egyptians still suffer from millions of landmines that were implanted in their soil in the 1940s, harvesting lives and limbs of Egyptians for decades.

The vicious battles of the Second World War in North Africa all the way to Alamein in North West Egypt were named by the Nazi leader Rommel “War without hate”. However, one should wonder how the absence of hatred caused more than 450.000 causalities among both the Allied and Axis troops between 1940 and 1943. Neither was that the end of the story, as both sides made use of Egypt as a fighting arena to implant millions of landmines and explosives. Those devices were discretely buried, and are still waiting for Egyptians, who pass by what seems like a historical war theatre, to die because of a war that ended 75 years ago. Unfortunately, neither the victorious nor the defeated cared to clear the explosives and the landmines that they left, threatening the lives of humans and animals that cross the area every day. It is estimated that 23 million landmines are still lying under the Egyptian Western desert sands, of which only 10-15 % were cleared starting in 1980 until 2018.

The situation in Egypt, especially in the North West region, is very unusual as the minefields were not placed in a recent conflict, which the case for most of the countries in Asia, Africa, The Balkans and East Europe where people are still threatened by minefields. Egypt is considered to have about a fifth of the world total landmines and unexploded ordnance. The Devil’s Gardens, as they are called by Egyptians, have been a continuous threat since the 1940s. Time is not kind when it comes to that threat; as sands and dunes have been moving for decades to make the few military maps that are left irrelevant, making it harder for Egypt and international agencies to clear those vast minefields.

The area most heavily mined., accessed 2-7-2019


Despite suffering from the landmines buried in its own soil, Egypt has refused to sign the Ottawa Treaty (The Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on their Destruction). The Ottawa Treaty has articles that assert the physical and psychological rehabilitation of the victims of landmines. The Treaty raised three obligations to signatories: mine clearance, stockpile destruction and assisting the victims. According to Egypt, the first obligation is not binding and thus leaves the door open for those who originally placed landmines to refuse the clearance duty which would cost those countries hundreds of millions of US dollars. On the other hand, Egypt was criticized for being itself a manufacturer and stockpile holder of millions of landmines. Egypt acknowledged this accusation and stressed the importance of this weapon to secure its long desert borders with neighboring countries. However, Egypt insists that while it manufactures landmines, it refrains from planting them in inhabited areas and argues that the current situation is radically different than what happened when Europeans implanted mines in its soil in the 1940s.  Egypt announced in 2004 that it has imposed a moratorium on production and export of antipersonnel mines, claiming that the production was stopped in 1988 and all export activities stopped in 1984.

The Egyptian Ministry of Foreign Affairs claim that the registered and reported landmines explosions in the North Coast area since the end of the Second World War has reached a total of 8313 victims in 2014, with more than 600 people killed and many more injured.

There are no accurate sources or statistics to confirm the numbers of the victims, whether dead or disabled because most of the victims are Egyptian Bedouins whose relationship with the urban centers close to them were not well established until recently, limiting the flow of information. Additionally, their reliance on tribal structures does not entail a lot of accurate record-keeping or reporting. It was not until the 1980s that the Egyptian authorities started monitoring, registering, assisting and compensating the victims and their families. The most accurate and systematic campaign to register and assist the victims was carried out in 2015 by the Egyptian government and the UNDP Egypt officials.

In 2017, Egypt established an agency dedicated to the problem of landmines and its victims called the National Center for Mine Action and Sustainable Development, replacing the Executive Committee for Supervising Mine Clearance and Development of the North West Coast, which had existed since 2007. The new agency determined that in addition to demining, clearance and development of the infected areas, their primary objectives also entailed assisting the victims and raising awareness of the problem of landmines among the local population. With the updated database of 2015, the Center managed to offer assistance to the Egyptians who were injured or disabled due to the landmines or other explosive remnants. The efforts focus on physical rehabilitation, which is especially needed as most of the victims in the area have lost limbs. Artificial limbs, wheel-chairs, hearing aid sets are supplemented by psychological support offered to the victims and their families. The UNDP in Egypt supports those efforts financially and technically and it insists on creating livelihoods and sustainable means of support for the victims. This is a goal shared by the Red Cross and the Red Crescent in Egypt. Together with the Egyptian government, these donors and other international organizations support the victims with micro-credit loans and in-kind support like sewing machines and vending kiosks as well as livestock and farm animals for the families who are willing to continue their grazing activities in safe locations. Additionally the organizations provide assistance to the victims in order to improve their living conditions; ensuring clean water supplies, building roofs and providing electricity are all tools to support the victims.

Raising the awareness about the dangers of landmines has also been a priority for the Egyptian government as well as civil society in the Western North coast region. A recurring program for schools and university ensures that people have access to lectures and practical lessons on how to avoid, treat and report landmines. Additionally, similar training, albeit in a less organized manner, is provided to shepherds and truck drivers whose everyday activities require crossing those dangerous fields.

The United Nations coordinator in Egypt, Edmund Cain, declared in 2000 that the situation in the North West Coast of Egypt was hindering the efforts undertaken to develop the area: “Egypt needs to use this land. The population is growing. Some of this land is potentially very fertile land. In fact, part of the land off the Mediterranean in the El-Alamein area used to be the breadbasket of previous civilizations … But if you go out there now you can see the sand littered with unexploded ordnance, shells that have not been fired.” This was a confirmation of Egypt’s stance, as it had always raised the demand for the clearing of the minefields as both a humanitarian and a developmental need for the area. The area’s natural resources are not put to full use either; with extensive mineral reserves including limestone as well as crude oil and natural gas reserves amounting to some 4.8 billion barrels and 13.4 trillion cubic feet respectively still lying in the area. Furthermore, potential available water resources also remain untapped, failing to use the area’s to help change the lives of the inhabitants by improving agriculture or providing water for house-hold use. The Egyptian government argues that its efforts to initiate projects in agriculture, irrigation and tourism in the area are constantly paralyzed by the presence of the landmines and the explosive remnants. The landmines are a danger no one is ready to face even if those developmental projects have the potential to change the lives and income of the Bedouins who are at the forefront of the suffering caused by these mines. Both inhabitants of the area as well as other Egyptians are well aware of the situation and they are afraid to work or invest in the area and face a sudden explosion.


–  Egypt: the National Center for Mine Action and Sustainable Development

– UNDP Egypt cooperation with Mine Action

– Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on their Destruction, 18 September 1997

– UNDP Egypt: Climate and disaster resilience,

– Monitor: Landmine and cluster munitions, Monitoring progress in eliminating landmines, cluster munitions, and other explosive remnants of war.

– “UN takes stock of landmines in Egypt”, Daily Graphic: Issue 147833, February 14th, 2000

– Said Megahed et al, Egypt Landmine Problem: History, Facts, Difficulties and Clearance Efforts, Conference: International Symposium: Humanitarian Demining 2010, Šibenik, Croatia, 27 – 29 April (2010)At: Šibenik, Croatia


Blog Post: The State as an Organism: The Biopolitics of “Contagion”

Anton Cebalo, MA student in the Politics, Cultures and National Identities programme of Leiden University
wrote a blog on the film Contagion, directed by Steven Soderbergh (2011)

The film Contagion follows the rapid spread of a virus which grips the entire world in social disorder and hysteria. In doing so, the film relates how uncontrolled pandemics can shake the foundations of civil society. One can see this steady progress as the virus begins its spread from a small group of hosts and quickly expands to include much of the globe. The end result is civil strife: looting, outright violence, riots, and multiple factions fighting for legitimacy in a crisis of faith in institutions. The film demonstrates the social contradictions of pandemics: individuals must be isolated to halt its spread, but people must also inevitably work together to find a cure. The end result is a paranoiac social environment where distrust is rampant as everyone is afraid of the “unknown” —an environment where everyone is suspect of being a potential infectious carrier.

Contagion thus takes a macro-level analysis of pandemics and applies it to the micro-level of individual social units. In this way, the structural decisions of the CDC and government officials result in a cascading ripple effect which is felt at every level of society. Mitch Emhoff, played by Matt Damon, is cast as the “everyman,” who although is not aware of the complex power dealings at the top, nonetheless feels the pull of social disorder in his immediate life. This structural perspective is only underscored by the global nature of pandemics, and how nation-state governments can often act as impediments towards global solutions in the face of such health crises.

A Still from Contagion (2011), showing the desperation of Mitch Emhoff, the main character (played by Matt Damon)

When viewed through the realm of biopolitics, the entire social sphere can be viewed as a metaphor for illness itself. If we view the state as a quasi-biological organism, we can see how the pandemic first causes disorder within highest levels of state power. Then, like spreading through a body, the chaos multiples: first, trickling down through media, then to individual towns, stores, local governments, and so on, until it infects the entire social organism. Even the circulation of capital, like blood, is cut off from certain segments of the social body resulting in further illness. In this way, the intensifying social strife caused by the pandemic is analogous to its biological spread in the body. Disruption at one sector of the social organism necessitates crises in others, resulting in looting and violence. Curfews and methods of social control are used to quarantine dangerous elements within the social organism, as the body fights off the virus’s spread. Eventually, units of the social organism—the police, local governments, and so on—begin to shut down as many defect, die off, or become consumed by the illness of the social body. The social body becomes injured and, if left untreated, there is a probable chance it might die.

Therefore, in Contagion we see how a viral illness and its spread biologically is analogous to its malicious growth in the social body. Bodies are infected one-by-one, but the greater organism—civil society—is the ultimate host which is injured as a result. Casualties can multiply rapidly if the social body cannot effectively regulate itself in the face of such existential danger. When faced by such a pandemic, state power reverts back to one of its original functional roles: the regulating of bios or life. This fundamental principle is what is called into question as the hysteria of the pandemic continues to consume the masses. By the end of the film, however, the virus is not able to effectively kill the state-led ‘head’ of the social body. Nonetheless, the social body must drastically rebuild itself, potentially leaving it paralyzed for generations to come.

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.

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

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[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.