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Vulnerable, Entitlement, Diversity, Science-based, Fetus, Transgender, and Evidence-based.

Banned words, community-based science, and science communication under the cheeto-faced fascist-in-chief


Less than two weeks ago, a Center for Disease Control (CDC) employee told the Washington Post that the CDC was now forbidden from using the above seven words in their upcoming budget proposals. First, may all whistleblowers be forever blessed, and safe, and financially secure, and may their bravery be rewarded with more collective liberation for us all. Secondly, Vulnerable. Entitlement. Diversity. Science-based. Fetus. Transgender. Evidence-based. And once more: Vulnerable. Entitlement. Diversity. Science-based. Fetus. Transgender. Evidence-based. Let's speak these words and fight like hell for the communities, individuals and concepts they represent.


In the days that followed the Post article, we saw several deflections, including a tweet from CDC director, Dr. Brenda Fitzgerald, assuring us that there are no banned words at the CDC, and the agency will continue to talk about its "important public health programs." The Department of Health and Human Services has also fired back that any talk of a ban is overblown, or a misunderstanding of the annual budget process, in which staff routinely receive guidance around how to phrase their budget requests. Having worked on several CDC-funded projects, I can assure you that yes, the CDC bureaucracy does in fact routinely provide a truly epic amount of "guidance" around phrasing; I once had a report returned for editing because I had used too many synonyms, in an effort to, you know, write well.


But this different from routine CDC micro-management, because we are now living under an increasingly fascist, repressive regime. Less than a week after the CDC leak, Attorney General Jeff "As Long as the Klan Doesn't Smoke Pot" Sessions rescinded 25 documents related to the Americans with Disabilities Act (ADA). Like the CDC, Sessions promised us that there was nothing dictator-y afoot; he was simply and transparently "cleaning up" confusing websites. And honestly I believe this statement as much as I believed Sessions' confirmation hearing pronouncement that he couldn't be racist because he has Black "friends". I mean, sorry Jeffy-poo, but we still see your horribly racist policy decisions.


The rescinded documents provided guidance for business and public entities about implementing the ADA, a complex law, and detailed how the ADA was to be enforced. And this was after Education Secretary Betsy "Literacy is Over-rated" DeVos rescinded 72 documents outlining how schools should protect the rights of students with disabilities. Obama-era documents about protecting trans and gender non-conforming students had already been rescinded. Rescinding implementation guidelines effectively stops our laws from protecting vulnerable people and communities. Revoking enforcement procedures effectively nullifies our laws. And this is absolutely intended, and by design.


These removals parallel this administration's overall approach to science, which the Union of Concerned Scientists has described as "a clear pattern of actions that threaten public health and safety by eroding the role of science in policy." There's the "disappearing" of scientific data, particularly related to climate change, and other scrubbing of official websites. Luckily, these disappearances were anticipated by heroic data-saving by hackers, scientists and volunteers, creating giant citizen-archives. In fact, some commentators believe that the CDC word ban is another attempt at science-saving; if the radioactive cheeto's administration won't fund research and programs that support transgender people, let's call the programs something else so that they can keep on going. Maybe, but regardless, the fact that our elected (potentially by Russia) leadership is hell-bent on deleting science is still at least as concerning to me as climate change itself. Regardless of what the CDC did or didn't tell its employees, the scientific establishment is under attack in the U.S.


Which breaks me to the semi-good news, or at least something hopeful. The scientific establishment is under attack in the United States. But how much do we need the scientific establishment? We're talking about the same establishment (read: old rich white boys' club) that brought us eugenics, drapetomania, gender identity disorder, and all sorts of other prejudice endowed with seeming scientific legitimacy. This is the same science establishment that until very recently routinely experimented on and stole from oppressed communities, and increased maternal deaths by de-legitimizing midwifery (through racism, given that midwives were predominantly of color, but that's another 18 posts). Our scientific establishment is rife with gender bias, sexual harassment and white men getting so many legs up that very few other voices are heard (or published). And its not like we've left behind the scientific racism we were founded on, either, and scientists of color face deeply racist workplaces. And we could talk for a long time about the ableism, trans-antagonism and classism embedded in science, to pick a few. I'm the wrong jaded intersectional feminist to wrap this up in under 2000 words, but suffice to say the the scientific establishment is pretty damn limiting.


And, just as important, science has traditionally been elitist and secretive. You often need to be part of the scientific establishment just to access scientific findings. Academic journals are so expensive; I could eat for a week for the price of 24 hour access to a single article. The peer review process is flawed and crumbling, at best. Its hard to afford human subjects approval and monitoring unless you are a member of a large institution, and good luck innovating in the bureaucracy and toxic culture of the large academic institutions.


We're not teaching science much differently than we did in the 1950s, leading to an general public still alienated by their failure to memorize the entire periodic table; did anyone not get Ds in high school chem? Wheedled down to tedious memorization, science feels small and unwelcoming, not magical or approachable like it should. As scientists, we thrive on technical detail, percent differences of 0.0001. We talk among ourselves, in highly specialized, jargon-filled language. We feel that communicating with lay-people somehow dilutes the purity of our holy science. We distrust journalists, and even family members, who attempt a bird's eye view of our research, with broader claims of proof than we would ever make. We speak in minutia, with technical terms and data points, and its no wonder people tune us out. We're a closed society. We've been a closed society for far too long.


I hate trump and his rising orange tide of fascist oppression as much as i've ever hated injustice, which is to say I am equal parts passionately dedicated to resistance and passionately furious. But. But I see an accidental glimmer of hope for science in these times: Like it or not, the scientific establishment is falling, and the doors to our scientific society are being flung open. Light is coming in. Science is becoming public property, and maybe, just maybe, science will be saved by belonging to the public.


Back to the late 2016 efforts to save the data: Scientists were part of the giant data migration from governmental to private servers, and they were brave. Those thumb drives with decades of data they shoved in their pockets are important. But working carefully alongside the official scientists were a whole lot of members of the general public, the same folks who were told that science wasn't really theirs when they couldn't remember the molecular weight formula past the test they scored a C on. The folks who lost interest when their social science professor at their community college told them their voice was needed in the field and they were talented as hell, but obtaining a phd takes a good 10 years, and the practical and financial costs are steep, also by design. The same folks who pick food and phone bills over access to jargon-filled journal articles. Hackers, journalists, students, retirees and volunteers saved the data, and in doing so, made it public property.


I think this is at least a little scary for scientists. We feel vulnerable and exposed. And I think that's a good thing, a sign of impending growth. Without the protection of the scientific establishment, we have to learn to speak in more than jargon and minutia. We have to be a little bit less hesitant in our statements of findings, and we have to capture public interest. We're fighting for our lives, and we can't do it without a broader base. But also, we need to remember whose keeping science alive at this point, and it's not the CDC, Jeff Sessions or the orange poopstain on our national underwear. They want science gone. But the general public wants science to stay, and to be a sustaining force.


I think we're ready for science as resistance-as long as we can share our science. Our doors must stay open, and our houses must be full of conversation, big picture conversation, communicating the joy and truth and mess of science.


Perhaps as a coping mechanism, I keep thinking about science communication. Like, it's now 1 am, and I'm thinking about how we communicate in a way that shares science, brings people in, and makes research into communal property. The days of pricey print academic journals and giant science conventions are numbered. But our science will be safe if we talk about it beyond our labs, ivory towers and observation points. I want a world where science is as accessible and well-known as the Kardashians, and I think we're headed that way, possibly with less nudity. But it's on us to share ourselves and our work as openly as reality stars, again possibly with less nudity. Our communication needs to cross boundaries and destroy borders. We have to transfer ownership of science, and that starts with how we talk about science, and who we talk to.


In solidarity,

Nechama


P.S. In classic 1 am decision making, I've decided to extend our "free sample" of science communication offer through January 15, 2018, to carry us into the new year. This is the promotion where you tell me what you want to share and I create a short custom dissemination product for you (i.e. a blog post, op-ed, community summary, infographic etc). It's completely free, no strings, except having to deal with my political rantings.


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