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"Only the Old and Sick will Die": reproducing 'eugenic visuality' in covid 19 data visualization

COVID-19 illness and death has disproportionately impacted marginalized groups the world over. In the United States, Black and Indigenous people have endured the largest risk of death. Disabled and chronically ill people have continued to isolate as their peers “return to normal”, bearing sole liability for their own safety in a society that deems their lives not worth the “sacrifice” of public health measures. While public and institutional policy makers bare personal responsibility for “survival of the fittest” approaches to public health, data science and visualization has contributed to and legitimized many of these eugenic policy decisions through design tropes I characterize as ‘eugenic visuality’. In this paper, I explore how inadequacies and obscurities in COVID-19 data visualization have contributed to and sustained public narratives that devalue marginalized lives for the comfort of white-supremacist and capitalist social norms. While I focus on visualizations and statements provided by the CDC, the implications extend beyond any individual or institution to our collective preconceptions and values. Namely, unexamined biases and unquestioned norms are embedded in data science and visualization, constraining how data is represented and interpreted. These assumptions limit how data can be leveraged in the pursuit of just social policy. Therefore, I propose guiding principles for a Just Visuality in data science and representation, supported by the work of disabled activists and scholars of color.

https://ieeexplore.ieee.org/document/10227111

https://www.researchgate.net/publication/373448965_Only_the_Old_and_Sick_Will_Die_-_Reproducing_'Eugenic_Visuality'_in_COVID-19_Data_Visualization

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#COVID19 #CovidIsAirborn #ThePandemicIsNotOver #Eugenics #Metaeugenics

@Gtmlosangeles Thank you so much! If I, Misfit got you, #metaeugenics might utterly destroy you

Plain language summary of "Metaeugenics and Metaresistance: From Manufacturing the ‘Includeable Body’ to Walking Away from the Broom Closet

I will start this summary by explaining the title. I usually skip that part. This time I am going to explain the title because the title is so long, and so annoying. In "Academia" (which is just a fancy way to say college), there is a joke about how professors choose titles for their papers. It's not a specific joke. But everyone likes to make fun of titles that go like this "short catchy title": "long title with complicated meaning". I choose this kind of title a lot, because I think it's fun. I don't take myself too seriously.

The first part of this title is "Metaeugenics and Metaresistance". Something-ics is a kind of science, or a way of thinking, like economics, or politics. Eugenics is a way of thinking that says there are good bodies and bad bodies, and that human beings have a moral duty to keep their bodies "good" and to only have children with "good" bodies. Eugenics also says that governments are responsible for making sure their citizens are only people with "good" bodies. Eugenic science was overtly racist and ableist.

Most people believe that eugenics is over. They believe it was a bad science that happened in the past, and that we don't believe in it anymore. The problem with believing eugenics is over is that it makes it hard for you to notice when it is still happening. When more black and Indigenous people die from a virus, some people understand that this is because of racism in medicine. But when more disabled people die, we think it is because their bodies are weaker - That they do not have "good" bodies. The truth is that disabled people are dying more not /just/ because they are vulnerable but also because we made public choices that endanger their lives.

We made these choices because we still believe in good bodies and bad bodies. We still believe that it is everyone's moral duty to make their body as strong as possible. We still believe that some people deserve to die because of the body they are in. This is metaeugenics.

For something to be meta- is for it to exist without being said or written out loud. It is important to be clear that when we say disabled people, we do not mean just white disabled people. Understanding metaeugenics helps us to understand why we are okay with so many disabled people dying. It also helps us to understand that black and Indigenous people are not just vulnerable to racism, but to ableism also, even when they are not disabled in ways that are obvious to us. Because we do not care about disabled people, we allowed black and Indigenous people to be put at greater risk from racism in public health. Metaeugenics can help us understand how racism and ableism work together.

Resistance means to work against something. In this paper I want us to think about the ways we can work against metaeugenics by paying attention to metaresistance. To notice metaresistance, you have to think differently about what you are seeing when you see people resisting something. You have to notice both what someone is directly working against, and also notice how that resistence “speaks” or does resistance against other things that are not clear - like metaeugenics. I will give some examples later.

The next part of the title is “manufacturing the includable body”.

The “includable body” is something disability scholars write about. When we talk about inclusion, we usually mean that society should be open and accessible to everyone, no matter their disability. But when we “do” inclusion, schools and workplaces usually set some rules about what a person must do or be or look like in order to be included. Some scholars that write about this are Tania Titchkosky, Sara María Acevedo, Joe Stramondo, Eunjung Kim, and Anne McGuire. When a disabled child has to “earn” their place in the mainstream classroom by graduating from certain therapies, this means they have been made “includable”.

This is one way we uphold metaeugenics. We make disabled people work to make their bodies “includable” in therapies before we will accommodate them in “mainstream” spaces. Disabled people are morally obligated to make their bodies as “good” as possible, and if they don’t, they are called “non compliant”.

If you know anything about inclusion, you might be a little confused. Inclusion is a right! In the United States, we have the Americans with Disabilities Act and the Individuals with Disabilities Education Act which means disabled people have the right to accommodations to access public life, work, and school. Unfortunately, rights and laws do not work without people doing the right thing. Even if you have the "right" to be included, who decides what counts as inclusion?

The problem with rights is that someone else is always in charge of deciding what "counts".

The United Nations has the Convention on the Rights of People with Disabilities (CRPD) and the Convention on the Rights of the Child (CRC). In my paper, I try to explain that when you put these documents together, they show a global metaeugenic attitude toward disability. The CRPD says that disability must be recognized as a natural part of human diversity, but that adult decision makers have the authority to determine the "best interests" of a disabled child. In the CRC, adults are responsible for considering the "best interests of the Child" and children are guaranteed the right to "develop healthily". What does this mean when the child is born into a body that the world declares is "unhealthy" or "disordered"? Basically, a disabled child has the right to be "fixed". Our rights comand us to manufacture an includable body for any person whose body is not "normal".

The final part of this paper's title is "Walking away from the broom closet". Ursula K. le Guin was a famous science fiction author. She wrote a book called "The Ones who Walk away from Omelas". In this book, Omelas was a Utopic society. A utopia is a place where everyone is happy and cared for. In the story, people find out that Omelas's happiness is only possible because there is a child, locked in a broom closet, who takes on all the suffering so that everyone else can be happy.

I think that in the real world, we have lots of broom closets where we make people suffer so that we can have our happy idea of normal. I think prisons are an example of broom closets. I also think that for many disabled children, the "intensive interventions" we force them to do in their "best interests" are a kind of broom closet. They suffer so that we can have our happy idea of a future without disability.

Attitudes toward children can tell us about attitudes toward the future. If we want to ensure our children do not have to be disabled, then we must also want a future where there are no disabled people. The disabled community is large and diverse. There are some conditions which are painful and some people want treatments that help them feel at peace in their own bodies. But that doesn't mean that you can eliminate disability. Disability is a natural part of human life. The society that wants to eliminate disability can only hope to eliminate itself.

I will end this summary with some stories.

On August 2, 2018, NBC News’ Health website published an article praising Google Glass
and researchers at Stanford University for the creation of a wearable app that may improve eye
contact for children with autism (Scher, 2018).
In preschool, [he] struggled socially with other kids. One hit him in the
face with a rubber mallet and another in the shoulder with a metal shovel.
“He didn’t see it coming,” [she] told NBC News. “When you don’t look
kids in the face, you can’t see their reactions or know what to expect.”
When he was 5, he was diagnosed with autism.
[N]ow 9, [he] started working one on one with a therapist using applied
behavioral analysis, a technique to improve social behavior, but [his
mother] saw little progress.
“Nothing really changed,” she said. “Until Google Glass.”

This child was assaulted by his peers. Because he was disabled, the solution was to put him in therapy. To use technology to change his behavior. To put him in a broom closet. So that other people could be happy.

In another project, researchers made a smart watch that would buzz to notify a child that they were behaving inappropriately. In this example, even "hand flapping" was considered inappropriate. At one point, "Child 5" was buzzed. He looked up and noticed that his teacher was too far away to stop him, and he continued flapping his hands. This child is my patron saint of noncompliance. His microresistance, written down in a scientific paper, is a testimony for all to see that the researchers are focusing on the wrong idea.

There are other examples, like the children who run away from robots designed to teach them social skills, or the children who scream at their therapists.

If we pay attention to where our participants are resisting our research, we can learn to recognize these broom closets, unlock the doors, and take these children out of Omelas forever.

https://ojs.library.carleton.ca/index.php/cjcr/article/view/1976

Hashtag soup
#PlainLanguage #SciComm #ScholarComm #STS #CDS #HCI #DisabilityStudies #HumanComputerInteraction #HumanRights #ChildrensRights #CRPD #CRC #Metaeugenics #Metaresistance #Eugenics #Omelas #UrsulaKLeGuin #Autism #Disability #DisabilityJustice #TechJustice #Technoableism #ColiberationLab

My #Introduction. AKA the Hashtag Explosion. My name is Rua M Williams and I am a #Disabled #Mad #Autistic #CommonCyborg and an #Academic studying #TechEthics #DisabilityJustice #MadRhetoric #Crip #Technoscience and #Autistic #Technoculture.

I work in the #STS #CriticalDisability and #HCI disciplines. I idolize #Histodon and #HistMed. I also study contemporary eugenics, which I clal #MetaEugenics.

I'm a #JustTech fellow with the #SSRC Social Science Research Council's #JustTechPlatform. My project is #CyborgImaginaries (formerly #Cyborg Coalitions but that sounded too neoliberal.. Which I did on purpose to get the award 🙃).