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Lessons for the Coronavirus Pandemic on the Cruciality of Peripheral Knowledge: Handwashing and the Semmelweis Reflex

Author: Monika Baár

Last Friday Google Doodle paid tribute to the legacy of Ignaz Semmelweis (1818-1865), the Hungarian obstetrician who first discovered that handwashing can have a life-saving effect. In addition, Semmelweis was featured, if only briefly, in several leading media outlets such as CNN, Independent and Forbes. The charming and humorous figure wearing a bow tie that appears on google doodle, drawn on an authentic image of Semmelweis dating back to 1857, radiates optimism. This is no surprise: after all, his discovery symbolizes the power of science over ignorance. But there is another story here that went unrecognized in these brief tributes: Semmelweis’s tragic fate, which testifies to the arrogance of mainstream hierarchy vis-à-vis fresh insight coming from the margins.

A visualization of the handwashing technique of Hungarian doctor Ignaz Semmelweis (Hungarian: Semmelweis Ignác Fülöp, 1 July 1818 – 13 August 1865).

While working in the maternity wards of hospitals in Vienna and Pest (now Budapest) in the 1840s, Semmelweis became puzzled by a strange phenomenon. Mortality rates among expectant and new mothers caused by the infection that was then called “childbed fever” were generally high in this period. But they were much higher in the wards staffed by doctors than in those staffed by midwives. Semmelweis realized that this difference was due to the habit of doctors performing autopsies and examining women in the maternity wards without disinfecting their hands, a practice that was responsible for causing the infection. Having discovered that the deadly disease was passing from the bodies of the dead to healthy mothers on the unwashed hands of the doctors themselves, he instructed doctors to wash their hands with a chlorine solution between patients and especially after an autopsy. The result was instant: the mortality rate in the doctors’ ward dropped dramatically and was no longer higher than in the midwives’ ward.

Despite clear evidence – the method stopped the ongoing contamination of pregnant women – Semmelweis was not able to convince his peers about the effectivity of his simple solution. His stubbornly pursued hand-washing suggestions were rejected by his contemporaries who even mocked and stigmatized “the weird man.” Some doctors refused his idea on the grounds that a gentleman’s hands could not transmit disease. Importantly, Semmelweis’s method contradicted ruling theories of the age, for example, the one which held that miasma, or bad air, was responsible for spreading disease. It was not until Louis Pasteur’s arrival on the scene and the ensuing acceptance of germ theory that Semmelweis could be vindicated and retrospectively earned the title “the savior of mothers”. The rejection by colleagues which caused several avoidable deaths contributed to the deterioration of Semmelweis’s mental health: he started to behave strangely, gradually lost his sanity and in 1865 died alone and abused in a mental asylum in Vienna.

Semmelweis’s story inspired the concept called “Semmelweis effect” – the reflex-like rejection of evidence or novel knowledge which contradicts established norms, beliefs and paradigms. Moreover, his story not only inspired a new concept, but also innovative artistic work: Semmelweis, a song cycle by composer Raymond Lustig. The message of this music-theater work can be best summarized by directly quoting the composer’s website:

Semmelweis explores the theme that everything we think we know can be overturned violently, and asks what is it like to be the first to see into a terrible blind spot and perceive a truth too awful to believe? To be an “outsider”—a “foreign” doctor, Hungarian, but living and working in Vienna’s top hospital in a xenophobic era—and to fear that no one heard you, that the answer may die with you? To hold an earth-shattering insight, and yet be haunted by all the mothers that would not be saved.

It is evident that the sudden appearance of the coronavirus will forever change our societies as we have known them and that the global pandemic has brought us to a point of no return. At a time when researchers are feverishly trying to address a scientific void and racing to create a vaccine for a new disease, it is worth reminding ourselves that the solution will not necessarily arrive from where we expect them. Perhaps it will not be one of those star scientists or cherished research teams but a Semmelweis-like outcast who will provide a crucial clue. Perhaps the clue will be much simpler than expected. One cannot but agree with composer Ray Lustig that:

There has never been a more urgent moment in history to reflect on the mystery of insight, the tension between truth and hubris, our cultural myopia, and the clear truth that we, as individuals and as a society, need our “outsiders,” our fresh and brave ideas, literally to survive.[1]

A trailer of the play Semmelweis for which Ray Lustig composed the music. For more of his work visit his website http://raymondlustig.com/works/semmelweis/ 

 

 

How the UN Year for Disabled Persons in 1981 inspires a mountain activity holiday project for kids with intellectual disabilities that still helps a participant decades later.

Author: Nicholas J. Cull 

Nicholas J. Cull is a scholar of international communication with a particular interest in the history of how nation states and other international actors achieve goals through engagement with foreign publics.  I’ve written about the propaganda in World War Two and the Cold War and have researched the UN’s publicity campaigns around the struggle against Apartheid in South Africa. Every now and again I am aware of the way in which messages from international actors have had a personal impact on me.  One such campaign was the UN’s year of the disabled, 1981.

This is the second blog that is part of our crowdsourcing initiative in which we asked the public to contribute their knowledge about the impact of the International Year of Disabled Persons through blogposts. For more information see: http://rethinkingdisability.net/call-for-blogposts/

How the UN Year for Disabled Persons in 1981 inspires a mountain activity holiday project for kids with intellectual disabilities that still helps a participant decades later

My story of the UN year of the disabled takes place in Britain.  I was fifteen years old and attending Bishop Wand Church of England secondary school in the quiet west of London town of Sunbury-on-Thames.  Our headmaster announced that autumn that the school would participate in the upcoming UN year of the disabled. He appealed for ideas. He was particularly keen that the school should be accessible to wheelchair users which was difficult given that it was on multiple floors with no lifts.  He suggested that we might find innovative ways to get around this other than spending money on installing lifts. On several occasions, he made the crazy suggestion that the rugby team might be employed carrying disabled kids in their chairs up and downstairs! Eventually, a more realistic plan took shape.  The school would be organizing a project whereby pupils would take intellectually disabled kids from a nearby special school [Manor Mead in Shepperton] on a mountain activity holiday in Snowdonia, North Wales. I volunteered immediately. My eagerness to be part of the project sprang from the mountain activity part rather than the disability part.  I had visited the destination (the Christian Mountain Centre in Tremadoc) on a school trip a couple of years before and was keen to return.

The idea of the trip was that we would be working to give the kids with disabilities a good time and their parents respite.  I don’t recall any talk about helping us typical kids to understand disability, rather it was framed as an extension of a school philosophy as a church-linked institution of doing something good in the world.  There was a strong overlap between the volunteers and students exploring personal faith. We brainstormed for ways to raise money. The eventual plan was that pupils would hold a ‘bring-and-buy’ sale. The highest value items were auctioned at an evening event by a professional auctioneer who donated his services.  We had the UN disability year logo on the publicity materials. The one item that sticks in my mind from the auction was a large signed photograph by Lord Snowden of a funeral gondola in Venice. 

Richard and Paul outside the mountain center just before heading home, pictures by Vicky Barrett

 

As the plan developed my fellow volunteers and I paid a visit to the special school and saw a group of the kids and get a sense of them.  We met the teacher from the school who would be coming along on the trip. I am sorry to say that up to that point I had had limited exposure to disability.  The existence of ‘special schools’ meant that my generation of British children had little face-to-face experience of kids with intellectual disabilities. Unless we had immediate neighbors or family members with disabilities, those kids existed in a separate world which we would only glimpse briefly as when their school bus drove along the main road on its daily round.  In the absence of experience fantasy filled in. It pains me to admit this, but much of the language of the daily round of teasing and insulting one another invoked disability. We would stick our tongue into our lower lip and imitate a person struggling to speak, use the names of disabilities like ‘spastic’ as epithets and even use the name of a local mental hospital as a term of abuse.  Kids from western parts of my school’s catchment area called each other Botley after Botleys Park Hospital, Chertsey; kids from the eastern part called each other Normansfield after Normansfield in Teddington, which I learned as an adult was founded by the man who identified Down Syndrome, John Langdon Down. Our language was a cover for fear of the unknown. As a younger child I had even actively avoided exposure to images of disability in pamphlets or in  Sunday Schoolclasses. When the older kids started having lessons on disability awareness-type issues, learning about Helen Keller and so on I insisted on remaining with the younger kids and helping the teacher, and did so for several years! Yet the unknown is also a source of curiosity. Visiting Manor Mead school I found that there was something engaging about the kids we met: an infectious air of happiness perhaps or a lack of the kind of inhibitions that seemed so much a part of a typical British teenager’s life.

Richard repelling down a rock, picture by Vicky Barrett.

Plans proceeded well until suddenly we ran into an unforeseen problem.  While there were plenty of Bishop Wand kids interested in joining the trip only five or so Manor Mead kids came forward.  In retrospect, perhaps our first move should have been to actually ask the school what their pupils might need rather than devising a program and hoping for the best.  The Head Teacher warned us bluntly that the trip was headed for cancellation. I shared the news at home at which point my father enters the story. My dad was also a Head Teacher but of a Middle School called St Anne’s, located in one of the less prosperous neighborhoods at the edge of Heathrow airport.  He pointed out that he had children at his school who had never had a holiday who would have loved the opportunity to go to Wales. He also recalled that there was an educational fund established by the will of a certain Lord Knyvett (with funds accumulated as a result of that man foiling the famous Gunpowder Plot of 1605) to which schools in his district could apply.  The concept of the trip was swiftly re-framed. The new idea was to present the trip to some of my father’s pupils as a chance for them to help the disabled kids rather than to get a holiday. With enough participants and with funds from Lord Knyvett’s charity the trip went ahead.

Looking back there was surprisingly little training given to those of us selected to provide one-on-one support for the Manor Mead kids.  We didn’t know much about their capabilities or their limits. I assume the plan was that we could learn as we went along. The group included a couple of boys with Down Syndrome, a couple of more introverted lads with Autism, and one girl whose background I don’t recall.  My recollection was that we were not paired with our particular charges in advance but rather were just encouraged to sit next to someone on the bus and see what happened. Getting on the bus I spotted a boy much smaller than me with Down Syndrome. He had a runny nose and wispy first beard showing on his cheeks.  He was very excited and jumping around in his seat and others were passing him by. I felt drawn to him and sat down in the next seat mindful of a degree of challenge. His name was Paul and for the next week we did everything together. Some of his care was shared with my friend Vicky but many aspects were necessarily separated by gender, including the overnight care.  My personal learning curve included what I now recognize as the usual milestones in learning about disability, most importantly the recognition that similarities far exceeded differences. Paul was very taken that we were both fifteen years old. I enjoyed his enjoyment of our activities, the world in general, and of me. I was profoundly challenged by the week, especially when called on to help with showering and to clean up after a couple of toilet accidents.

The attitude that took shape in me was a ‘get on with it’ feeling, accepting that there was no one but me to do a particular task. I felt my world contract to focus on his well-being for those days. We became very attached to each other. He sometimes seemed to be the one taking care of me — even on occasion attempting to feed me at dinner. Activities I recall including lots of singing, hikes, basic climbing, a trip on the famous Ffestiniog steam railway and a chilly morning in kayaks where with a helper at each end of their craft the kids got to enjoy bobbing up and down in the surf of the Irish sea.  We visited slate mines, Harlech Castle (I have a picture of that) and a hill farm to see some new lambs (which fixes the trip in April or so). One of the St Anne’s kids became very attached to a foal in the field next to the center. There were only a few times when Paul’s world seemed sad.  I remember that on our trip home he insisted on going on a ride designed for pre-schoolers at a motorway service station. He seemed such an isolated and forlorn figure sitting on a little blue car going round and round a circle of track, but he was happy.

Paul and two of the St Anne’s kids meeting a lamb, picture by Vicky Barrett.

After the return to home we did a couple of events to keep up with the kids, and I remember several occasions when a fellow veteran of the trip, Jonathan, and I waited outside his house for the Manor Mead school bus to go by so we could wave to Paul and Martin, Jonathan’s friend.  It was lovely to see the boys waving and doing the actions from one of the songs they’d been taught on the trip. It seemed natural that we would work to repeat the whole thing in 1982, and so we did. To help raise money we designed and sold Christmas cards. The second trip also went off wonderfully.  Many of the same kids from Manor Mead and St. Annes were joined by some newcomers. As well as helping with Paul I spent some time with Richard, another young man with Down Syndrome who, like me, had a big interest in movies. He would often communicate with movie quotes which could sometimes be perfect fit for the context.  By that stage some of the kids including Paul had moved over from school to a protected workshop called Fairways at Knowle Green in Staines. We visited them there one lunch hour. It seemed a cheerful place with dancing every day at noon to keep the kids moving. By 1983 our thoughts were elsewhere and I don’t recall any suggestion of a third trip.  I was preparing for A level exams and hoping to go away to university and felt somehow restrained in sustaining contact with Paul. Perhaps I felt embarrassed by the extent to which my horizons were so open and his so limited like the little circle of track. I still thought about him; treasured the pictures from our trips and even prayed that I might run into him by chance and have an opening to keep contact going.  I did not channel the experience into a career choice but merely thought of it as an important part of my growing up process, when I had learned that I could cope with more than I might otherwise have presumed. The experience remained a precious but private memory it was not even something I spoke about with friends or — in time — my wife. That changed in 2004.

A one week old Magnus

On 4 December 2004 my wife Karen and I — then living in the East Midlands of Britain — checked into our local hospital to deliver our 2nd son.  He was overdue and the doctors wanted to hurry things along. It soon became clear that there were complications. My first son had arrived two years earlier in the same room with a single midwife in attendance.  My second son required an almost comic number of doctors, who seemed to proliferate in the delivery room all anxious and all focused on the expected point of the baby’s emergence rather than my wife’s face, which was occupied exchanging alarmed expressions with my own face.  When our son Magnus emerged he was almost instantly whisked out of the door. I followed the doctors to the door — just a couple of paces — and realized when I looked down the corridor that they were already a good hundred feet away running to another section of the building.  There was an agonizing wait and then one doctor came back. “There is’ he said (in language we later learned was recommended as best practice) ‘something unexpected.’ He looked at Karen. ‘How OLD are you?’ he asked. ’38’ she said. ‘Hmmm’ he answered. ‘Have you heard of Trisomy 21?  It is also known as Down Syndrome…’ The word began to ring in my head like a giant bell. Down, Down, Down. Karen looked at me in a kind of panic and I said that I knew what it was and that I knew it was not the end of the world. Many things helped in the difficult and confusing days that followed.  I was much encouraged by friends and relatives who spoke of positive experiences with disability in general and Down Syndrome in particular. One friend told me that General DeGaulle had a beloved daughter with Down Syndrome and it didn’t stop him saving France. My uncle told me of a neighbor with a teenage son with Down Syndrome and popped a copy of the man’s book on the subject into the mail, but above all I had my own experience from 1981 and 1982 of a friendship with a person more like me than he was different who I felt had made my world a bigger and a better place.  ‘We can do this’ I told my wife.

I have often thought since of the significance of that UN disability year experience and how central it became.  The American TV writer Emily Perl Kingsley famously compared the experience of becoming a parent to a person with Down Syndrome to planning a vacation trip to Italy and finding that the plane has landed in Holland.  It is not what one expected but is an experience which has its own pleasures as well as challenges. Karen has said that when our family plane landed in Holland it helped us that I’d been there before, if only for the equivalent of a day trip.  My own sense of the experience is a little more geeky. In the first book of The Lord of the Rings the character Frodo is given a magic phial of liquid by Galadriel, the queen of the wood elves, to be a light in the darkest place.  In the second book, when he is in such a place, he is able to use that gift to defeat the giant spider Shelob. My experience from 1981 was like that.  It was a gift which I carried for years and on what seemed to be my darkest day it gave me light. Whether the UN Year was the origin of a happy day-trip to Holland or a magical gift that I carried for years, I remain profoundly grateful.

 

A picture of Nicholas and his son Magnus taken in early February 2020. 

British Jews and the United Nations International Year of Disabled People in 1981

Author: Samuel Brady

Samuel Brady is a Ph.D. student at the University of Glasgow. Having just begun a studentship researching the socio-political and technical history of the sports wheelchair in collaboration with the National Paralympic Heritage Trust, he has a deep interest in disability history, as well as matters of intersectionality, and as such all his major research projects have focused on these topics. For example, he conducted research into disability in the early 20th Century Jewish community of Leeds for his Masters degree as well as research into disability in the politics and literature of the Harlem Renaissance for his Undergraduate degree, both at the University of Leeds. As a Jewish person with a learning impairment, he believes talking about disability in the Jewish community is an important step towards a more inclusive community.

This blog is part of our crowdsourcing initiative in which we asked the public to contribute their knowledge about the impact of the International Year of Disabled Persons through blogposts. For more information see: http://rethinkingdisability.net/call-for-blogposts/

British Jews and the International Year of Disabled people

In the 17th October 1980 issue of the Jewish Chronicle, a letter from a female, wheelchair-using Jewish member of the Multiple Sclerosis Society detailed her difficulties attending synagogue during Rosh Hashana, the Jewish New Year.[1] Upon arrival at the Egerton Road Synagogue, she and her husband found no way for her to access the women’s portion of the prayer chamber. In Orthodox Jewish tradition, men and women sit separately, often with female congregants sitting in a gallery one floor above the men. At this Synagogue, the ladies’ gallery was only accessible by staircase, giving her no access options. When they asked if she could simply remain in the wheelchair at the back of the prayer chamber, they were refused and offered the alternative of remaining in the foyer, next to an open door, so she could still hear the religious proceedings. Alone, this letter could highlight issues surrounding physical access in synagogues, or the intersections between gender and disability for disabled Jewish women. However, replies to this letter place it within the context of the International Year of Disabled People (IYDP) and tells us much about how disability was treated in the Anglo-Jewish community in this period.

A reply two weeks later was shocked at this case, given the writer’s anecdotal view that synagogues across the denominational spectrum were “sympathetic” to the needs of others.[2] They went on to invoke the aims of the upcoming International Year of Disabled people to stress the change which was needed in the community:

  1. The increasing awareness of the needs, abilities, and aspirations of disabled people.
  2. The participation, equality, and integration of disabled people.
  3. The prevention of disability.
  4. More positive attitudes towards disabled people.

The second reply – penned by the secretary of the synagogue – suggested however that this situation was caused by a lack of forward correspondence by the disabled person in question, and that there was an appropriate viewing area, but this was inaccessible for safety reasons that were insurmountable on the day.[3] This second response, in certain ways, encapsulates the need for a broad, large-scale movement like the IYDP, and the importance of awareness about disability in the Jewish community.

The Anglo-Jewish community had established various forms of social welfare since readmission in the mid-seventeenth century, and this allowed the community to support itself in times of struggle. Frankel advances this idea, by suggesting that Jewish welfare is “inextricably linked to the survival and maintenance of Jewish values and a Jewish presence in the Diaspora.”[4] Jewish welfare usually took the form of financial support, however, such as providing loans to help unestablished immigrants set up small businesses, or providing money for specific religious foods, although there was occasional support for disabled people. Nonetheless, disabled Jews have often found themselves distanced from the wider community, and Jews admitted to non-Jewish institutions and asylums were frequently completely divorced from their Jewish cultural and religious life.[5] Thankfully, attitudes towards disability in the community began to change after the Second World War, and Jewish disabled people were offered more support via organizations dedicated to certain impairments, such as the Jewish Deaf Association and the Jewish Blind and Physically Handicapped Society. These groups allowed disabled Jews to retain their Jewish identities whilst receiving dedicated care and support, eliminating many issues of the existing support systems. Nevertheless, these systems were not perfect, and the advent of the IYDP encouraged further consideration of the lives of disabled Jews.

The Central Council for Jewish Social Service, created in the 1970s, sought to improve the ways in which Jewish social care operated, by introducing a unified system of co-ordination and improved service delivery of social care within these organizations.[6] As part of this aim, the Council wished to review the various Jewish disabled care organizations which fell under its remit and see how they could improve its service based on the aims of the IYDP. A sub-committee was formed of representatives from the Office of the Chief Rabbi, the Jewish Blind Society, Young Jewish Disabled and the Jewish Deaf society, among others. Their goal was to identify issues faced by disabled Jews in the community, make recommendations of how existing services and facilities could be improved, and consider the attitudes of the wider Jewish community towards disability.[7] Importantly, this research only extended to those with sensory or physical impairments, as another committee examined problems related to mental illnesses, psychological impairments and learning difficulties (evidence of which I was unfortunately unable to find). Upon reviewing existing resources and facilities, and conducting research into those Jews with specific impairments, the Committee agreed to two key areas of improvement, as demonstrated in the following image:

The scan of the above report findings is included with the permission of the Office of the Chief Rabbi and the London Metropolitan Archive.

The ways in which the committee recommended to solve these issues largely related to better education for non-disabled people in the community about disabled people, via better training for rabbis, teachers, and youth leaders; encouraging school and youth movement to engage more with disabled people; and the creation of initiatives by synagogues to better educate congregants. Other recommendations specified the need for separate residential facilities for deaf Jews; better accessibility from residences into Jewish neighborhoods, shops and places of worship; and more encouragement of independence in all walks of life.[8] The message from the committee’s findings is clear: residential facilities needed to be more accessible and more encouraging of independent living, whilst also recognizing that many barriers facing disabled Jews came from non-disabled Jews, and using education to improve this. Vitally, these recommendations fall in line with the mission of the IYDP; increasing participation of disabled people, spreading awareness and creating positive attitudes in the wider population. Importantly, the committee recognized the long-term support that would be needed to make these changes:

“Although the incentive to establish the Advisory committee was designed to mark the International Year of Disabled People, it is felt that in keeping with one of the major aims of the year, such a project should not be terminated with a report at the end of 1981. But the work commenced during the Year should be considered as a springboard for future developments…”.[9]

Disappointingly, however, it does not seem like much immediate improvement beyond the report was achieved in 1981. In a letter sent to the Office of the Chief Rabbi on 31st December 1981, the last day of the IYDP, mention is only made of one specific development; occasional prayer services specifically for deaf Jews.[10] This makes sense, as the report highlights large scale issues in the community and the recommendations would be unfeasible to introduce within the year itself. Yet, negative attitudes toward disabled people and impairment could still be easily found in 1981. One such example is in reference to then Chief Rabbi Immanuel Jakobovits, who in November 1981 wrote about the Jewish duty to preserve life. Whilst starting his argument with maxim of spiritual equality regardless of physical or psychological impairment, Jakobovits argues that under no-circumstances is ‘quality of life’ sufficient justification for the deliberate ending a life. To further this point, he comments: “the tragedy of a defective child may open up otherwise inaccessible resources of selfless love and other spiritual virtues. The supreme objective value of a cruelly afflicted being may well lie in the refining influences such as life exercises on those charged tenderly to protect it.”[11] This argument objectifies the disabled person, by reducing them to a means to a spiritual end, while invoking negative language such as ‘tragedy’ and ‘cruelly afflicted’, which are often associated with a medicalized view of disability. As such, the need for more education for spiritual and community leaders was of great importance for the future inclusion of disabled Jews, as highlighted by the subcommittee’s findings.

Other areas of Jewish life also were impacted by the message of 1981. Adverts in the Jewish Chronicle by charities like the Jewish Blind Society, for instance, were common, and by 1981 the specific message and brand of the IYDP was used to encourage awareness about disabled people. These efforts also included fundraisers, such as the performance of Barnum at the London Palladium in support of the Jewish Blind Society. This highlights the role of other Jewish organisations in spreading the message of the IYDP, and the importance of disabled organisations within specific communities to increase the IYDP’s impact.

As such, it is significant to consider intersectional aspects of the IYDP and recognize the impact the Year had across different communities. Without acknowledging barriers within specific communal contexts, a broad conceptualization of the impact of the Year cannot be understood. This logic is also in reference to the fact that Jewish efforts were seemly unrecognized at the time. For instance, no mention is made of any Jewish efforts in a pamphlet published in 1982 about the impact of the IYDP on Britain, and a section about religious life only details Christian efforts of inclusion and accessibility.[12] This underemphasizes the progress that was made by identifying the barriers disabled Jews faced and accounted for the uninformed mindset of the wider community, leading to issues such as that at the Egerton Road Synagogue. The IYDP presents a unique opportunity to explore a variety of intersectional disabled history, and future scholarship should aim to focus on this.

 

Visual sources are included with the permission of the Jewish Chronicle: 

Jewish Chronicle, 1981, July 24th, p 19,

 

Jewish Chronicle, 1981, January 9th, p 5.

 

Jewish Chronicle, 1981, April 3rd, p 13.

Jewish Chronicle, 1981, January 30th, p 2.

Sources: 

[1] Jewish Chronicle Online Archive, 1980, October 17th, p 39. Accessed here: https://www.thejc.com/archive/1.417622?type=edition&editionDate=1980-10-17&wholeEdition=true

[2] Jewish Chronicle Online Archive, 1980, October 31st, p 20. Accessed here: https://www.thejc.com/archive/1.417713?type=edition&editionDate=1980-10-31&wholeEdition=true

[3] Jewish Chronicle Online Archive, 1980, November 14th p 39. Accessed here: https://www.thejc.com/archive/1.190061?type=edition&editionDate=1980-11-14&wholeEdition=true

[4] Frankel, W, “Survey of Jewish Affairs, 1987”, (Fairleigh Dickinson University Press, Cranbury, 1988). p 239.

[5] Manchester Jewish Museum Oral Collection: JT41 – Paul Sutton

[6] Frankel, p 239.

[7] London Metropolitan Archives, ACC/2805/07/12/017 – ‘DISABLED PEOPLE: ‘REPORT AND RECOMMENDATIONS BY A SPECIAL SUB-COMMITTEE OF THE CENTRAL COUNCIL FOR JEWISH SOCIAL SERVICE’, PAPERS ON THE YEAR OF THE DISABLED AND CORRESPONDENCE WITH VARIOUS CHARITIES’

[8] London Metropolitan Archives, ACC/2805/07/12/017

[9] London Metropolitan Archives, ACC/2805/07/12/017

[10] London Metropolitan Archives, ACC/2805/07/12/017

[11] Jakobovits, I, “Dear Chief Rabbi: from the correspondence of Chief Rabbi Immanuel Jakobovits on matters of Jewish law, ethics, and contemporary issues, 1980-1990” (New York, KTAV Pub. House, 1995), p 134.

[12] Kates, H., Waller L., and Crampton, S., “International year of Disabled People … a beginning, not an end …” (London, National Council For Voluntary Organisations, 1982[?]), p 49.

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Studeren met een beperking in 2020: interview met Marcel Melchers, decaan aan de Universiteit van Leiden

Interview met Marcel Melchers, decaan aan de Universiteit van Leiden

Author: Wessel de Cock

In deze korte interview serie worden verschillende Nederlandse decanen aan het woord gelaten over de veranderingen met betrekking tot studeren met een functiebeperking die zij hebben zien plaatsvinden in hun werk als decaan. In het eerste interview Marcel Melchers van de Universiteit Leiden.  

Sinds 20 jaar werkt Marcel Melchers als studentendecaan aan de Universiteit van Leiden. Hij heeft in die tijd veel zien veranderen: ‘waar mijn voorganger nog zo’n drie tot vier afspraken per week had en het studentencontact voornamelijk via de opleiding geregeld was, is dat nu centraal bij ons geregeld en krijgen wij veel grotere aantallen studenten op bezoek’. Dit komt volgens hem enerzijds doordat er ‘veel meer diagnoses worden gegeven en er daarom meer studenten met een functiebeperking zijn. Als je een beetje afwijkt van de norm krijg je soms al een diagnose en word je gecategoriseerd. Anderzijds komen er ook simpelweg meer hulpvragen van studenten binnen die anders misschien niet hadden aangeklopt’.

Volgens Melchers gaat het om ongeveer één op de tien studenten op HBO’s of Universiteiten een ‘beperking die een belemmering oplevert’. De overgrote meerderheid van deze groep kan, al dan niet door het gebruik van voorzieningen, zonder belemmering hun studie afronden. Bij één van deze drie ontstaan er ondanks de voorzieningen wel problemen. Dyslexie is volgens de onderzoekers de meest voorkomende functiebeperking en daarna komen ‘chronische vermoeidheid, migraine, beperking in concentratie, long en ademhalingsprobleem, huidaandoening en psychische problemen of aandoeningen’. Uit het onderzoek blijkt verder dat ‘met name studenten met autisme, ADHD, een psychische beperking en een functionele beperking hebben een grotere kans op uitval’, terwijl ‘studenten met chronische ziektes of dyslexie niet vaker uit dan andere studenten’.[1]

Een belangrijke reden dat studeren met een functiebeperking makkelijker is geworden in de afgelopen decennia zijn volgens Melchers de internationale verdragen waaraan de Universiteit van Leiden zich, net als veel andere Nederlandse Hoge Scholen en Universiteiten, heeft verbonden. Een voorbeeld is het VN-verdrag voor de rechten van de mens met een beperking dat op 14 juli 2016 in Nederland in werking trad, al moet het daaruit voortkomende beleid nog wel worden geïmplementeerd. Belangrijker was de wet gelijke behandeling op grond van handicap of chronische ziekte, die in april 2003 werd aangenomen. Deze wet zorgde er volgens Melchers voor dat er op de universiteit ‘meer aandacht kwam voor studenten met een functiebeperking en dat er beleid werd gemaakt om tot verbeteringen te komen’.

Een ander gevolg van het VN-verdrag is volgens Melchers de ‘kennisverspreiding onder medewerkers over wat beperkingen betekenen en welke voorzieningen studenten met een functiebeperking nodig hebben’. Tegelijkertijd stelt hij dat ‘met name tegenover dyslexie nogal wat scepsis bestaat onder vooral een oudere generatie van docenten. Dat is natuurlijk heel generaliserend gezegd, maar de jongere docenten weten hier over het algemeen wel beter mee om te gaan’.

‘Toen ik begon als decaan wisten de opleidingen niet hoe ze moesten omgaan met studenten met een functiebeperking. Ze werden bij sommige opleidingen weggestuurd of de faciliteiten die ze nodig hadden ontzegd. Vanaf 2006 hebben we door een aantal subsidies aanpassingen kunnen doorvoeren waaronder een buddysysteem.

Waar het buddysysteem in eerste instantie vaak gebruik maakte van ‘psychologiestudenten die misschien wel veel wisten over autisme, maar eigenlijk niets over de specifieke studie’, wordt er nu vaak voor studenten gekozen van de studie. ‘Dit is omgedraaid omdat studenten van de specifieke studie veel beter kunnen vertellen over hoe je het beste voor tentamens kan leren, hoe je hoofd en bijzaken moet onderscheiden of hoe je studiestof kan samenvatten. Doordat de buddy’s van de studenten met een functiebeperking van de opleiding zelf komen kunnen ze studie specifieke tips geven.’

Foto van de Universiteit Leiden https://www.leidenuniv.nl/nieuwsarchief2/2076.html

Een andere belangrijke stap was de oprichting van het Fenestra Disability Centre in 2007 naar aanleiding van een subsidie voor studeren met een beperking van het Ministerie van Onderwijs, Cultuur en Wetenschap. Dit is een centraal punt binnen de universiteit waar mensen met een beperking naar toe kunnen gaan als ze hulp nodig hebben bij het aanvragen van voorzieningen of voor informatie. Hierdoor is het aantal studenten met een beperking die wij begeleiden ook sterk gestegen’.

De meeste studenten met een functiebeperking komen bij het Fenestra Disability Center langs voor hulp bij het aanvragen van ‘voorzieningen zoals software voor vergroting van teksten, recorders voor het opnemen van colleges en extra tijd bij tentamens’ of bijvoorbeeld financiële regelingen zoals een jaar extra studiefinanciering. Tegelijkertijd heeft de universiteit een buddysysteem, waarin voornamelijk studenten met een autismespectrumstoornis door ouderejaarsstudenten begeleid worden bij de ‘praktische kanten van studeren en hoe de opleiding werkt’.

‘Sommige opleidingen klagen dat studenten met een functiebeperking vaker de eindstreep niet halen. Ik zie dat zelf eerder als een argument om nog meer te doen voor deze groep dan om het dan maar te laten’.

Alhoewel het besef van het ‘belang van goede voorzieningen voor studenten met een functiebeperking’ volgens Melchers binnen de universiteit gestaagd groeit, blijven er nog steeds veel barrières. ‘Het bestuur krijg je altijd wel mee met je voorstellen, maar die staan vaak ook een stukje van de werkvloer. Met name de opleidingen zuchten nog wel eens over de inspanningen die ze moeten leveren voor studenten met een functiebeperking. Ze klagen er bijvoorbeeld over dat deze studenten zorgen voor een daling van het rendement van afgestudeerde studenten met een diploma, omdat studenten met een functiebeperking vaker de eindstreep niet halen. Ik zie dat zelf eerder als een argument om nog meer te doen voor deze groep dan om het dan maar te laten’.

Daarnaast komt het Melchers soms nog steeds tot onenigheid tussen opleidingen en studenten met een functiebeperking over bijvoorbeeld een gebrek aan voorzieningen of de voortgang van de student. ‘Dat een opleiding meer tijd moet besteden aan een student met een functiebeperking is misschien zo, maar het gaat hierbij om de rechten van deze studenten. Als een opleiding soms nog steeds weigert voorzieningen te leveren dan komt het soms wel tot een rechtsgang’.

‘Nadat we in 2007 begonnen met Fenestra is het rendement van studenten met een functiebeperking die afstudeerden gestegen met 10%, dat is een gigantisch aantal studenten als je bedenkt dat ongeveer 10% van de studenten aan de universiteit een functiebeperking heeft. Deze cijfers kunnen we ook laten zien aan de opleidingen’. ‘Het bezoek van toenmalig premier Jan-Peter Balkenende in 2008 aan Fenestra zorgde ook voor veel extra publiciteit en hierdoor kwamen studenten met een functiebeperking bij zowel het bestuur als veel opleidingen hoger op de agenda’.

Hoop voor de toekomst

‘Waar ik naar uitkijk is dat er meer maatwerk wordt geleverd voor studenten met een functiebeperking. Nu vindt het grootste deel van het voorzieningenaanbod nog plaats vanuit de medische verklaringen van de student, maar omdat het College van Bestuur een aantal jaren geleden het VN-verdrag heeft ondertekend hebben ze ingetekend op het bereiken van inclusief onderwijs.’

‘Of we dit ooit bereiken weet ik niet, maar ik hoop dat er ooit een situatie komt waar een docent niet weet of een leerling een functiebeperking heeft of niet, maar waar de voorzieningen er simpelweg zijn en gebruikt kunnen worden. Dat er bijvoorbeeld extra tentamentijd is voor iedereen, dat de betere fysieke toegang gewoon overal aanwezig is, dat stoelen voor iedereen toegankelijk zijn en ook bijvoorbeeld dat het onderwijs voor diverse leerstijlen geschikt is en dat er werkgroepen zijn voor zo’n 3 leerstijlen. Sommige studenten zijn namelijk gebaad bij een visuele leerstijl terwijl andere studenten met bijvoorbeeld een autismespectrum disorder daar juist geen behoefte aan hebben.’

Een ander punt waar hij hoopt op verandering is de toenemende sociale druk onder studenten. Hij ziet steeds meer studenten met ‘angst, depressie en burn-out klachten’. In een recent rapport stellen ook het Interstedelijk Studentenoverleg en het Nederlands Instituut van Psychologen vast dat er telkens meer studenten naar de studentenpsycholoog gaan en dat de wachtrijen hierdoor langer worden.[2]

Melchers wijst als een van de oorzaken van de toenemende mentale problemen van studenten naar de toenemende rol van sociale media in het leven van studenten. ‘Ik zou het mooi vinden als sociale media meer een eerlijke, ware, voorstelling van het leven geven en dat jongeren meer openheid geven over de vervelende periodes in hun leven in plaats van enkel de mooie dingen. Je mag soms ook gewoon zeggen dat je een k*t-week hebt en ik heb het gevoel dat heel veel 18-jarigen dat niet meer durven en dat ze ook niet meer met elkaar of hun ouders praten over als ze zich vervelend voelen’.

 

[1] F. Steenkamp, Gebruikerstoets Studeren met een handicap. De oordelen van studenten met een functiebeperking over hun studie en instelling. CHOI, 2012. Handicap en Studie.

[2] https://www.groene.nl/artikel/zonder-een-stempel-word-je-niet-serieus-genomen

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’.

 


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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]

 

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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 (http://rethinkingdisability.net/  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: rethinkingdisability@hum.leidenuniv.nl.

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.

 

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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.

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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 www.yorkclio.com and we would be delighted if colleagues were to find them useful and to improve them.

[i] http://rethinkingdisability.net

[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: http://www.history.org.uk

[iii] At this link you can find the slot-ins we have developed so far: https://yorkclio.com/slot-ins/

[iv] Grant, E. (2018) ‘Abolitionist, activist, dwarf – we all need role models like Benjamin Lay’ www.newstatesman.com/culture/film/2018/04/abolitionist-activist-dwarf-we-all-need-role-models-benjamin-lay

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