Hearing Eugenics

DH ListeningEditor’s Note: Today we start off a series, a propos for World Listening Day 2016 on digital humanities and listening. As I mentioned in my Call for Abstracts in March, this forum considers the role of “listening” in the digital humanities (DH, for short). We at Sounding Out! are stoked to hear about (and listen to) all the new projects out there that archive sound, but we wonder whether the digital humanities engage enough with the the notion of listening. After all, what’s a sound without someone to listen to it? The posts this month consider: how have particular digital studies, projects, apps, and online archives addressed, challenged, expanded, played with, sharpened, questioned, and/or shifted “listening”? What happens to digital humanities when we use “listening” as a keyword rather than (or alongside) “sound”? 

We will be hosting the work of DH scholars who are doing exactly that: prompting readers to consider what it means to listen in the context of DH projects. Fabiola Hanna will be reflecting upon what DH means when it talks about participatory practices. Emmanuelle Sonntag, who has written for SO! before, will be addressing listening from the starting point of the documentary Chosen (Custody of the Eyes). Today, however, we start things off with a collaborative piece from the Vibrant Lives team on the ethics of listening to 20th century sterilization victims’ records.

Don’t just stand there. Take a seat and listen.-Liana M. Silva, Managing Editor

In the 1920s a young woman was admitted by her mother to a mental institution in California. The local doctor recommended her for sterilization with the following notes:

has been reported to have interest in sexual encounters

Mother is pregnant and cannot care for her (thinks she may be able to post-sterilization).

This brief note is representative of the stories of the roughly 20,000 people who were sterilized in California institutions of mental health. The soundscape of these institutions is largely lost to the past. We cannot recover the sounds of treatment spaces, family visits, recreation, and everyday life of those in the care of the state of California who were considered feeble, insane, or otherwise out of control.

Like the conversations about illness and reproduction presumably had in those halls, the sounds of salpingectomies (removal of fallopian tubes), vasectomies (severing the vas deferens), and, later, tubal ligations are lost to us. In the absence of human rights violations, this is perhaps as it should be; we cannot collect the minutiae of everyday life. But in situations where reproductive and disability rights have been limited, where we can see race and gendered bias, we may well have need of telling such stories.

Reparative justice best practices dictate that survivors should be able to tell their own stories on their own terms. How can we listen to such stories when the majority of our survivors have died and we have little to nothing in their own words?

LatinaGirlStockton1940

A redacted sterilization form from Stockton State Hospital. Image courtesy of Alexandra Minna Stern

While conversations between patients, parents, and doctors might be lost to us in terms of playback, they have embodied traces in the nearly 20,000 people sterilized in California between 1919 and the 1950s under eugenic sterilization laws. The 19,995 sterilization recommendations and notes, brought together under the project Eugenic Rubicon: California’s Sterilization Stories, cannot currently be made publicly available due to U.S. patient privacy laws. Important documentary films like No Más Bebés, which tells the story of Mexican-American women sterilized without consent at Los Angeles County – USC Medical Center in the 1960s and 1970s, have made it possible for us to hear accounts of such reproductive injustice first hand. But for the thousands of people sterilized between 1909 and the repeal of eugenics laws in 1979, we must find other ways to listen and to hear.

Given the privacy restrictions on working with this dataset and our concerns to care for the people who are represented therein, we (the Vibrant Lives team) felt it was important to find alternative methods that did more than de-identified and quantified graphs could do. We know all too well that we can’t recover the past “as it was.” Nevertheless, we are working to bring the emotional and intellectual power of sound and critical listening to a largely unheard history of sterilization of Latinx people. Specifically, our project prompts listeners to consider how listening fits into reparative justice for the victims of sterilization.

"Listen" by Flickr user Fe Ilya, CC BY-SA 2.0

“Listen” by Flickr user Fe Ilya, CC BY-SA 2.0

 

Listening Toward under the Law

That eugenics laws and their surgical enactments played out in racialized and gendered ways is not surprising but bears repeating. For example, according to work by Alexandra Minna Stern, Nicole Novak, Natalie Lira, and Kate O’Connor, patients with Spanish or Hispanic surnames were three times as likely to be sterilized as their non-Hispanic counterparts. Those lost sounds have traces in California’s Latinx communities, both in terms of the community structures themselves, but also in terms of soundscapes that never were because of sterilization. This acoustic ecosystem in which the politics of race, gender, nation, and mental health converged in dramatic fashion is recorded only in the bodies and medical records of the patients and the 21st century communities shaped by the children, born and unborn, of these patients.

Not only are we limited to working with the textual, institutionally generated remnants of the past, we are also constrained by 21st century health and personal data privacy laws. Our archive is a set of medical records and as such this collection contains sensitive patient data that must be de-identified and used in accordance with contemporary HIPAA (Health Information Portability and Accountability Act) regulations and IRB protocols.

This means that we cannot reveal names, dates, and other identifying information regarding those who were sterilized in the first half of the 20th century. We are unable to tell individual stories of sterilization lest the individual be identified. Traditionally, historians have used fictional composites to tell such stories and our collaborator Alexandra Minna Stern used this method in her 2015 second edition of Eugenic Nation.

The HIPAA guidelines and their impact on how we tell the history of medicine raises important legal questions about how we might balance a public right to know about practices (we’d call them abuses) within state-run facilities with the need to protect patients’ rights to privacy regarding their own reproductive and mental health. In some cases, it seems as though the privacy guidelines protect the state more than they protect any individual patient. In fact, we have seen a remarkable lack of concern for these records in their discovery and transmission. The records themselves were largely abandoned when Stern discovered the microfilm reels in the 2000s. They were lost again after she returned them to the state after having made a copy. The originals are lost as far as we know.

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“Archive” by Flickr user Carolina Prysyazhnyuk, CC BY-SA 2.0

Listening Toward the Past

Vibrant Lives is working not with sounds found, but with archival records found and then sonified (transformed into sound) as a way of listening toward those rooms, conversations, and procedures. In brief, this sonification entails the following steps

  • Selecting a subset of the large data set (we can’t currently process the whole)
  • Selecting between two and four axes of information, such as gender, race, age at sterilization recommendation, consent, or nationality
  • Mapping the informational values into numerical space – sonification requires the creation of a dataset whose limits are 1 and -1 (based on how the speakers work)

This work has been done to date using two tools: Sonification Sandbox, an open source tool developed at the University of Georgia, and GarageBand, a proprietary music making tool that comes with Macintosh computers. We use Sonification Sandbox to create the score first and then turn to GarageBand because it has a greater range of instrumentation available. The sonification process is still very experimental and exploratory. Team member Jacqueline Wernimont does all of our sonifications for us and she is trained as a historian of literature and technology. While she has extensive experience within digital humanities methodologies, sonification is a new effort for us.

We have begun producing short sample tracks that allow us to enact the kind of listening toward that we’re advocating for. In the track below, we have data from the age, gender, and consent axes for the period 1940-1949. Additionally, this sample draws only from what we’ve described as “Spanish surname” patients, the vast majority of whom were American-born of Mexican descent, although they also include some other Latinx national communities.

Latinx Eugenics Sample Track

 

As you listen, each note represents one Spanish-surnamed person recommended for sterilization. The children, both boys and girls under 18, who were sterilized without consent are the highest notes, and the adult men who were sterilized with consent are the lowest.

Listening Toward as Ethical and Communal

Listening is always about an ethical relationship and it is particularly fraught when the effort to listen and to encourage others to listen entails hearing about a person’s most intimate health information and experiences. This is particularly true when those experiences may include trauma from unwanted surgery or other experiences.

While we might think of patient privacy as a form of care, in this instance we find ourselves wondering who these regulations actually serve. According to the updated 2013 HIPAA guidelines, personal health records are no longer considered sensitive information 50 years after death (it was previously 100 years).  Preliminary estimates by our team indicate that as many as 1,000 survivors might be alive in 2016. However, while the vast majority of the people discussed in the records are no longer alive, family and friends may well be.

We respect the need for family members and friends to privacy when it comes to the health records of their loved ones. At the same time, an essential component of most restorative justice programs, like those undertaken for North Carolina eugenic sterilizations, is an articulation of the violations, which HIPAA blocks in many ways (North Carolina’s cases were revealed by investigative journalists who are not subject to HIPAA and the IRB regulations that we must adhere to as academics). As a consequence, those who might most benefit from reparations – sterilized individuals and their immediate families, including children – are likely to die before the privacy laws enable us to draw attention to the individual impacted by the racialized and gendered discrimination evident in the records.

The sonification of these records and the companion participatory performances that we facilitate allow us to intervene and share these important stories before all of the survivors and family members have passed away. We have the opportunity to drive justice-oriented processes forward while there is still time.

Consent/Non-consent Sample Track (entire population)

Vibrant Lives focuses not just on the stories but also on the people who listen to the audio. We spend time watching how our audiences participate in listening toward the history of eugenic sterilization in California. Below are images of recent presentations of this work in which we’ve incorporated both haptic (touch-based) and sonic performance.

KUEugenicsImage2ElikaOrtega

Participants listening at a presentation at the University of Kansas. Photo by Elika Ortega.

 

Part of what we see here is the attentive posture of our participants – leaning in to feel a history of sterilization. The haptics are being shared with a thin, red metal wire that the participants have to touch lightly in order to not dampen the signal for others. For us, this is an effort to bring care for the experiences of others into the performance. The history of eugenics has impacted communities and we are creating communal aural and tactile experiences as a way to disrupt the notion that academic work and knowledge is a solitary endeavor.

The performance captured above is also an exercise in patience and as such expresses a willingness on the part of the participants to sit with a disturbing history. The sample people are listening to and feeling here is 100 seconds long with each note/vibration corresponding to one person who was sterilized. In most performances the participants stay for the duration of the piece, but there have been instances where people have touched a haptic piece and then walked quickly away. We can’t know why some have chosen to walk away.

KUEugenicsImage3PamellaLachSome of those who have stayed have shared with us that they felt responsible to feel and hear each person. It’s an abstraction, to be sure, but we are intrigued by the power of listening and feeling to encourage people to not simply look and walk away. As one participant at a Michigan performance noted, the “tingling (from the haptics) lingers, it’s spooky.” Another participant at the same performance indicated that she felt “more implicated” having engaged with a multi-media experience than with a visual like a graph or chart. When asked why, she responded “I’ve felt it and will continue to remember that, but still will likely do nothing in response.”

In creating performances where participants have to care for one another and care enough about the people represented in the data to stay through a durational piece, we are working to redress the extraordinary lack of care that the records represent, both in terms of testifying to the violence done to men’s and women’s bodies and in terms of the State of California’s lack of regard for this history.

 

Sounds Felt, Sounds Touched

 

Our work is an ongoing experiment. We’ve moved from haptics along a wire, to haptic spheres that vibrate with the sonification. The image above is from one of these events this spring. We’ve retained the communal effect while transforming the embodied structure of the event. Participants now gather around, encircling the object as they listen toward a history of reproductive injustices. People still tend to lean in – to have heads lowered in a posture of intense focus. The sphere itself demands that someone cradle it and it also requires that people touch lightly once again so as to not dampen the experience for others.

We plan to expand our durational events in our next iteration known as “Safe Harbor” in which we hope to explore how to best care for those people sterilized by the state by caring for their data. In this instance we are thinking of sounds (and more) that we’ll make together with impacted communities. For this work we are particularly interested in engaging audience members in the hosting and care of the eugenics data and, by extension, the survivors.

As a way of enacting a site-specific response to both historical and contemporary human and reproductive rights violations that have occurred in the state, we plan to stage this durational event in California. We’ll begin by inviting audiences to help build and shape an empty warehouse space with us, transforming the empty space into a place of care where we can listen toward these histories. The audience will be invited to converse about the research and reflect upon conversations through making, creating, and ultimately building up our safe harbor.

We plan to listen to and co-create with impacted communities through collective making of the space. As a result, Safe Harbor will enact a cooperative improvisational process shaping socially responsive dialogue – performing, hearing, listening, documenting, and rebuilding notions of care in real time. What we hope to discover here are shared sounds of resistance, repair, and healing. Sounds that might let us listen toward the past, while also creating more just futures.

Featured image: “Water under 12.5 Hz vibration” by Jordi Torrents, CC BY-SA 4.0, via Wikimedia Commons

Vibrant Lives is a collaborative team that makes, stages, and performs as part of interactive multimedia installations. Jessica Rajko and Eileen Standley are both professors in the Dance area of the School of Film, Theater, and Dance at Arizona State University (ASU). Jacqueline Wernimont’s home department at ASU is English and she’s a digital humanities and digital archives specialist. Wernimont and Rajko are also multimedia artists/faculty working in Arts, Media, and Engineering.

The data derives from a larger project, known as Eugenic Rubicon: California’s Sterilization Stories, a multidisciplinary collaboration among Arizona State University, University of Illinois Urbana-Champaign, and University of Michigan. This larger collaboration includes historical demography and epidemiology, public health, history of medicine, digital storytelling, data visualization, and the construction of interactive digital platforms. This team is quite large, with our center of gravity residing at the University of Michigan where historian of science Alexandra Minna Stern directs the Eugenic Rubicon lab. Stern discovered the microfilms of more than 20,000 eugenic sterilization patient records in 2013. Stern and her team have created a dataset with this unique set of patient records that includes 212 discrete variables culled from over 30,000 individual documents. This resource is the first of its kind, encompassing almost one-third of the total sterilizations performed in 32 states in the U.S. in the 20th century.

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About jwernimont

I am an assistant professor of English at Arizona State University where I teach early modern literature, digital humanities topics, and history of science. My research focuses on the long histories of quantification and narrative, including the ways they discriminate and disenfranchise.

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