7/18/2017

Tuning in on disability history

by Pieter Verstraete, KU Leuven

We all produce sounds and we all are surrounded by sounds. Whether we now have a disability or not, sound, one could say, is among the many things that are capable of uniting us. That is of course not to say that sounds cannot be used in order to divide humanity. On the contrary. Despites its potential to bring people together, sound also is very much implied in a multitude of processes, strategies and tactics that intentionally as well as unintentionally divide people.1

The way sound plays a constitutive role in the way disabled and non-disabled persons relate to one another is made painfully clear by disability activist Amanda Baggs in her ground-breaking YouTube video In my language. Baggs’ video not only clearly illustrates the segregative power of sound – in particular human language – but also points towards possible ways of altering our habitual way of listening to and producing sound.

Amanda Bagg’s 2007 movie In my language already has attracted 1.441.103 views on YouTube

Disability historians already have taken up this acoustic approach. Several scholars have started to explore the way historical soundscapes have resulted in the construction or deconstruction of particular categories of disabled persons. One example that is definitely worth mentioning is Rebecca Scales’ analysis of the role played by the radio in the rehabilitation of World War One blinded soldiers in Interwar France.2 Scales’ analysis powerfully shows that sound is political and was – and still is – intimately involved in the way we define what a human being is and how it should behave.

I myself have listened to the sound of another area and time period. Together with my colleague Ylva Söderfeldt I explored extensively the source material that covers the existence of European deafblind persons – and this in order to counter-balance the dominant positions occupied by famous American deafblind in the histories that exist.3 After having gone through the material it struck us that the way the ‘voices’ of European deafblind were treated throughout the nineteenth century changed dramatically. Where at the beginning of the 19th century intellectuals writing about the first discovered deafblind individuals wrote respectfully about these subjects, this attitude had been completely replaced by the overwhelming dominance of the sound produced by professional educators. In the reports to be found about deafblind individuals in the second half of the nineteenth century it was the voice of the teacher that mattered.

Sound, so it seems, is a fruitful pathway for disability scholars who are eager to reconstruct our contemporary attitudes towards persons with disabilities. Listening to sound is always an interpretative act. The way we listen to sounds – for example voices – cannot be disconnected from the cultural, social and political contexts in which we were raised and in which we operate.4 What the sound produced by for instance a Deaf person means therefore differs from time to time, and from place to place.

By listening closely to the reigning norms and values of a particular time-period one will better understand why and how particular things happened. Take for instance the ‘invention’ of the white cane. In order to understand what happened we have to go back to the Interwar period when European cities increasingly were confronted with enhanced mobility.5 The fact that more and more people started to make use of cars altered the urban soundscape enormously and brought with it a number of problems for the persons with visual disabilities. Not only did the noise produced by the cars prevent them from orienting themselves on the basis of what they heard. They also experienced a lot of problems to make clear to the drivers of those cars that they wanted to cross the road. In response to the transformed soundscape of the 30’s Madame Guilly d’Herbemont for instance introduced the white cane in France. In order to make themselves visible amidst the traffic noise the ‘blind’ needed to raise their white canes and wait until one could hear the approaching cars slowing down.

Illustration from the French journal Voilà of 15th October 1932
stating: “The white cane has crossed the Atlantic and starts
to conquer the USA//
© Oblin-Brière (1981). La canne blanche.
Toulouse: Privat.
The example of the white cane clearly demonstrates how the transformation of city-sounds can lead to technical innovation. Disability scholars, however, also will need to reflect on how persons with disabilities themselves have altered our soundscapes themselves. One example I can think of is the enormous impact the educational experiment with the Wild boy of Aveyron had on the way sounds have started to sound from the end of the nineteenth onwards. For it was Maria Montessori who by orienting her educational ideas and ideals towards the reports of the Wild boy of Aveyron boosted the didactical use of sounds in schools.6 Without Itard’s educational experiment our schools would sound completely different. There’s a lot more to say and write with regard to what one can hear when tuning in on disability’s past.7 I leave it up to you to add existing insights, possible avenues to explore, or, why not, to produce particular sounds yourself.

Footnotes:
[1] Bailey, P. (1996). Breaking the sound barrier: A historian listens to noise. Body & Society 2 (2), 49-66.
[2] Scales, R. (2016). Radio and the Politics of Sound in Interwar France, 1921–1939. Cambridge: Cambridge University Press.
[3] Verstraete P. & Söderfeldt Y. (2015). Deaf-blindness and the institutionalization of special education in 19th century Europe. In: Rembis M., Nielsen K., Kudlick C. (Eds.). Disability history handbook. Oxford: Oxford University Press.
[4] Sterne, Jonathan (Ed.) (2012). The sound studies reader. London: Routledge.
[5] Oblin-Brière, M. (1981). La canne blanche. Toulouse: Privat; See also Anderson, J. & Pemberton, N. (2007). Walking alone: aiding the war and civilian blind in the inter-war period. European Review of History—Revue européenne d'Histoire 14 (4), 459-479.
[6] Verstraete P. (2016). Lessons in silence: Power, diversity and the educationalization of silence. DiGeSt, 3 (2), 59-74.
[7] For an introduction to one possible intersection of disability studies and sound studies see: Friedner, M. & Helmreich, S. (2012). Sound Studies Meets Deaf Studies. Senses and Society 7, no. 1 (2012): 72-86.

Recommended Citation: 
Pieter Verstraete (2017): Tuning in on disability history. In: Public Disability History 2 (2017) 12.

6/29/2017

#CRIPTHEVOTE and Beyond

by Faye Ginsburg and Rayna Rapp
Department of Anthropology & Center for Disability Studies, New York University

In the spirit of this blog’s dedication to “disability histories for the present,” we use this post to reflect on the future of disability publics in the United States, more than a quarter century after the passage of the Americans with Disabilities Act (ADA) in 1990, and in the wake of the 2016 election of Donald Trump to the presidency. As groundbreaking legislation, the ADA was necessary but not sufficient to undergird the actual transformations required for people with disabilities to be fully recognized as American citizens, whether in schools, movie theaters, on the internet, or in the voting booth.

In a 2016 essay inaugurating Disability, a series of weekly essays in The New York Times written by and about people living with disabilities, scholar-activist Rosemarie Garland Thomson wrote about the expansion in numbers and recognition of people with disabilities, pointing out that “disability is everywhere once you start noticing it.”
The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of aging and learning disabilities emerge and grow, so does that percentage.
(Garland-Thomson 2016, p. SR1)
Given these numbers – moving toward 20% of the population – we were excited when disability activists launched two remarkable nonpartisan efforts to get the 2016 presidential candidates to talk about issues relevant to this community for the first time in American history. Using the reach of social media, the Twitter campaign #cripthevote engaged voters and encouraged politicians to have a national conversation about disability rights. Additionally, Washington D.C. based disability activists launched RespectAbility, another initiative to get candidates to address disability issues. Both groups underscored the potential power of the disability vote in America.

A study by U.S. political scientists Lisa Schur and Doug Krause, well-known for their work on disability, law and social policy, projected that roughly one-sixth of the electorate, more than 35 million people with disabilities out of 56 million total were eligible to vote this year. This was heartening but not surprising. What WAS surprising was that these voters for whom disability is a central concern, identified almost equally with the two major political parties (Schur and Krause 2016). Given the stark contrast between the Clinton and Trump campaigns around disability issues, we nonetheless assumed, along with many others, that the disability vote would indeed rally for Clinton, whose policy recommendations addressed areas of key importance to this constituency. This was in sharp distinction to the lack of any interest in the issue on the part of Trump, as well as his disgraceful behavior at a November 2015 rally when he mocked the atypical gestures and shortened arms of The New York Times reporter Serge Kovaleski, who has arthrogryposis. This was the most widely condemned of all Trump’s many insults during the long and nasty campaign season. Moreover, he continued to be silent on disability issues and policy proposals throughout his campaign. In contrast, in June 2016, Priorities USA ran a pro-Clinton ad in which Dante Lachtman, a seventeen-year-old African American cancer survivor with a limp watches Trump’s mocking behavior on TV, then speaks to the viewer, saying : “I don’t want a president who makes fun of me, I want a president who inspires me. That’s not Donald Trump”. 

6/15/2017

Leprosy, Heritage, and Art: Histories of Exile in a World Perspective

By Patrick Devlieger

Leprosy is an ancient disease that pertains to most all regions of the world at some point in time. In the Western context, it may be a disease of the far or recent past, while in some countries in Asia and Africa, the disease has still a lot of currency. Nowadays, the world seems to be starkly divided between parts of the world where it is mostly forgotten and a shame if it could not be forgotten. Away from the daily experience, leprosy becomes metaphorical, to refer to something repugnant. The dominant medical discourse is one that pertains to its final extermination, its disappearance, and to relegating the disease to the past. In this blog entry, I wish to evaluate some of the actors that pertain to preserving the history and legacy of leprosy, which leads me in the direction of colonial governance, religion, and especially the arts. Throughout the world, the recent history over the past 150 years can hardly be seen outside the colonial context, its governmental policies of segregation, the response of religions, and the arts. The modern context, according to Michel Foucault, established a relation between knowledge and the legitimation to remove people outside the society. Perhaps more than anything else, it is the arts that have an enduring impact on the way of remembering leprosy, and that capture most the weight of history and the enduring impact of its heritage. While medicine attempts to the disappearance, the arts continue to capture and challenge its existence.

Throughout the world, segregation practices were implemented in the 19 th century. They were quite different from the practices of medieval times that required that people with leprosy announced their presence with a clapper or a bell, before leper houses were established. One chronicler in the 13th century calculated the existence of some 12000 leper houses throughout Europe, for care and quarantine, and these were organized like convents and monasteries (Ashworth 2010). The segregation practices of the 19 th century included the exile of people with leprosy to islands or otherwise isolated areas, in the context of nations states and colonization. Famous examples are Kalaupapa, Sorok Island, Robben Island, and otherwise isolated areas such as the remote villages in China’s southwest, or some remote valleys, such as the Hemel en Aarde Vallei in South Africa’s Western Cape Province, or Anandwan in Maharashtra, India, or Yonda Leprosy Settlement in the Democratic Republic Congo. Such places were often places of heroic collaboration between government and Christian churches, but in some cases like Anandwan, also the ground of non-religious heroism. Its heroism however is always one of service.

5/25/2017

“I guess I’m in between” A conversation with my mother about disability.

by Ylva Söderfeldt

“Disabilities? I don’t have any!” This is my mother making a joke when I asked her if I could interview her for the blog. She’s visiting from Sweden to hang out with her grandkids (and me), something she does often as she’s mostly retired from her work as a neurologist. My mother is a professor of neurology, holds an M.D. and a Ph. D., and still practices medicine sometimes. She has four children and seven grandchildren. Born in 1946, she belongs to the post-war generation and although she was quite busy raising children and building a career, she has also been a life-long activist. She is also hearing impaired since birth and now has a cochlear implant. I’m her youngest child, now a historian, and have focused on Deaf history for most of my career, a topic I got acquainted with through her. I wanted to talk with her about the many ways in which disability figures in our lives.

The thought I had was to have a conversation with you about disability from different perspectives.

Do you mean hearing impairments?

Yes, that would be one thing we could talk about. And there are different dimensions to that too, professional, personal…


Well, I realized at a very early age that I had reduced hearing. But to be honest, although I realized that there are many things I just can’t do, like singing, I never thought that it was a real obstacle. I just didn’t have that perspective. I think many others think like that: “I can’t do this because I’ve got this thing”. But I never thought that. Maybe because I did very well in school. I was better than the hearing kids! So maybe that immunized me from thinking that hearing is superior.

You mean you didn’t see it as a problem?

Yes I did see it as a problem. But I never thought that I couldn’t do the things I wanted. OK, I can’t do everything, I was never going to be a ballet dancer for instance, but those are all things I never wanted to do anyway. What I wanted to do, I could do. But it was harder for me than for others, that’s something I’ve realized now that I didn’t before. I had to work harder than other people.

I think everyone else realized that. I know we talk about it, among the siblings. “How did she do it?”

Yes, I realize now looking back that a lot was tough.

When I was little, you had hearing aids, and it’s a favorite anecdote of mine how I used to think I’d get them too when I got older, just like I’d get other things I associated with an adult woman: hearing aids, nail polish, heels… But you didn’t have hearing aids growing up.

No. And that’s a funny story because many disabled kids think their disabilities are going to go away when they grow up. But for you, it was the other way around. Anyway, I’ll tell you: I grew up in the administrative region that belonged to Örebro, and in the 1950’s, they were the most advanced in Sweden when it came to hearing impairments. They had a deaf school there that was very oral-focused, and the kids there were the ones with the most residual hearing, or who were deafened late. So maybe because of that, they were prominent and very modern in audiology, and there was a training facility. I lived in a small town so I didn’t have regular access to this, but I got sent to a summer school for hearing impaired children. I didn’t feel very at home there, I must say. But it made me aware of that Deaf people existed. Some were more deaf. We definitely didn’t sign or anything but a couple of the kids knew Sign Language. So I learned that it existed.
But I still thought, for a long time, that I was only mildly hearing impaired. But then, quite late, in my twenties, I had to realise that I was actually quite severely hearing impaired. And at the same time, it got worse. The high frequencies almost completely disappeared. When I was almost thirty, I got my first hearing aid. I think I had tried some on as a child but I never wore them before that. They weren’t that good back then. And my hearing was better.
So then I got my hearing aid and I did have some troble coming to terms with that at first. And so I got curious, what are my options if I can’t compensate for this with technology? And that’s how I started getting interested in Sign Language.

This was in the 1980’s, right?

Yes.

Me and my mother in 1984

 So at that time, you were a doctor, you had been working for a few years. And it was also a time when all kinds of disability movements, not least the Deaf movement, really took off and were quite radical. Was that part of the attraction?

Oh yes absolutely. The way that it happened was, there was this organization for deaf and hearing impaired people who didn’t sign, it was called “Höreselfrämjandet”, which means something like “Pro-Hearing”. And I thought that was so stupid! So I wrote something about it, for their paper. And then lots of people contacted me, younger people, my age and younger, who liked what I’d written. And then I suddenly had a new network. I started to connect more with deaf people, went to Sign Language classes, and joined the Deaf club where we lived. And you know I was part of this little group that made the paper. [In the late eighties and early nineties, she was one of the people behind a fanzine-type publication for hearing impaired people with a left-wing profile].
But I never got very good at Sign Language. And I don’t know why.

You can’t have been that bad. I remember you had interpreters.

Yes but that was more Signed Swedish. And I understand better than I sign. I think it was just too much, in my life at that point. I couldn’t go all-in.

Yes, you had lots of children at home in the 1980s. 

Yes I did! But I also chose not to go all-in, because I knew, this is a special world, and I don’t want to live in the Deaf world full-time. I didn’t want to make that transition.

Did you think of that as a choice you made?

Yes, that was a choice. Some people I knew, who had a similar background, they chose to go the other way. I’m not really in touch with them any more.

What I’ve thought about is that the disability rights movement, including the Deaf, they were in opposition to the medical model, and one of the main confrontations was with the medical sphere. 

Yes, and that was another thing, when the cochlear implants came, I reacted against that. So that was one of the issues that also brought me there, that I didn’t agree with the ideology behind that, and I still don’t. Even though I have an implant now.

But at the same time, I think if I’d ask you, as what do you identify? My guess is that your first answer would be “as a physician”. You have a very strong identification with your profession. 

Yes I do! My identity as a physician is very strong. But I had an education in behavioral science as well. And that helped me at the same time to have a more critical view of medicine.

Were there any conflicts though, with people you met in the Deaf movement, and your identification with medicine?

No. I think the opposite. People liked it, that there was a doctor who were on their side. And I also met some people with the same situation, in the United States, who were physicians and Deaf. And that was important to me. They were even more deaf than me, biologically and socially. So I never felt that was a conflict.

How about the way the experience in the disability sphere influenced you professionally? I mean obviously it did, you did a Ph.D. about neuroimaging of Sign Language.

The research I did, that was mostly because I wanted to finish what I’d started before going to medical school, when I studied psychology. Doing a Ph. D. in psychology, which happened to be about Sign Language, was a way to finish that. And the best thing that came out of that was that I got into working with neuro-functional methods, and I’ve kept doing that.. But in the clinic, I never wanted to work with deafness. There are people, you know, paraplegic doctors who work with spinal injuries. I never felt attracted to doing that, working in the rehabilitation or anything. But think I do have a more nuanced view than some colleagues, on what it means to live with a disability. And I had to work harder.
But I don’t want to complain. You should see this facebook group I’m in, for hearing impaired people, they complain a lot! [She starts telling an anecdote about what gets posted there.]

I’ve heard you joke about hearing and deafness a lot over the years. Maybe we shouldn’t do that in a public forum! 

Well but you know within any group it’s ok to joke about ourselves, isn’t it? But in terms of groups, I don’t know which one I belong to. I guess I’m in between. That has it’s own charm!

Recommended Citation: 
Ylva Söderfeldt (2017): “I guess I’m in between” A conversation with my mother about disability. In: Public Disability History 2 (2017) 9.