Life as an Extreme Sport

When CRISPR Evokes Fear “Gene Editing” Doesn’t

I’m seeing this NPR CRISPR trials article going around, with comments ranging from the relatively mild “here we go” to the more typical doom-and-gloom engineering humans into super-race/extinction/X-men/choose your X-related catastrophe. And while the Editas one (still) concerns me—I don’t think the tech is where it needs to be, and I don’t believe anyone will stand up to the founders of Editas because of who they are–I, overall, am not at all fussed about these trials. Why? Well, take this Penn cancer study. It’s not like this is NEW. The tool, CRISPR, is, but it’s just changing the kind of tool being used for gene editing. We’ve been gene editing for disease treatment for a while now.

For example: on Weds, there was a paper in NEJM using HIV to cure bubble boy syndrome. How? HIV was the gene editing tool. The cure was cool and new, the tool was not.

But because it lentiviral gene therapy, not CRISPR, no one blinked, even though it says “gene therapy” in the very title of the paper.

CRISPR seems to evoke a strange panic with people; fundamentally, people are treating it as if it’s some kind of new thing. It’s not; it’s just upgrading your college student knives to a really nice German set after your first big adult paycheck.

*Content modified from a comment originally published on Damien Williams’ Facebook.

Jazz Hands vs Clapping – One is Not the Other

Oh for the love of – there’s a news story going around saying that the University of Manchester Student Union “banned” clapping, because it’d disruptive for speakers and can cause issues for students with sensory issues, and told students to instead use “jazz hands” to convey applause, like sign language!

So in other words, the University of Manchester Student Union asked students to applaud, and folks who’ve never chatted with a deaf person or been exposed to a signed language assume jazz hands is just the same as sign language, because it…involves hands?

Ah yes. Because they are so similar. (They are not similar at all.)

I mean, if you want to talk about language constructing the world and Othering, here you go; you couldn’t ask for a better example. Because at best, the media coverage of this SHOULD read “clapping out, clapping in at university – student union encourages silent applause” or somesuch to be accurate, but they went for the evocative and absolutely incorrect, Busby Berkeley frill of “jazz hands” instead. So think about it: what does BBC or ITV or anyone else GAIN from characterizing a move towards a silent applause as “jazz hands” rather than “signed applause” or “silent clapping”? It’s about how we construct worlds – and exclude people. Jazz hands and spirit fingers are punchlines, often literally. So what does that say about the writers’ view of signed languages? (Here’s a hint: nothing good.)

Ableism isn’t always about access, it’s also about environment. Using someone’s native (signed) language as a punchline, delivered while simultaneously deriding the needs of students who can experience sensory overload and the thoughtfulness of students thinking about how to make their spaces more inclusive of multiple needs and languages, is a pretty special level of “hey, you’re being a jackass.”

Make Oceania Great Again – Trump Administration Bans Seven Words from CDC Budget

Science, in the old sense, has almost ceased to exist. In Newspeak there is no word for ‘Science’. The empirical method of thought, on which all the scientific achievements of the past were founded, is opposed to the most fundamental principles of Ingsoc.

-George Orwell, 1984

Late in the day Friday, the Washington Post reported on the Trump Administration’s latest attempt to “make Oceania great again:” a list of seven words and phrases that the CDC is not allowed to use in any official documents being created for the next year’s budget. These words are:

  • fetus;
  • diversity;
  • vulnerable;
  • entitlement;
  • transgender;
  • science-based;
  • evidence-based.

Oh. Is that all? I mean, we wouldn’t want the Centers for Disease Control and Prevention having anything their budget about evidence-based or science-based medicine, right? Heaven forbid, who knows where that could lead? Do you study vulnerable medical populations? Apparently not according to the CDC. Are you transgender? Nothing for your health in the budget – you can’t be mentioned, you see.

Oh sure, some people will say that this merely means that the CDC must be “creative” when writing their budget request, but as Emily Nagoski noted on Twitter this morning, similar biases and bans were faced by the gay community – researchers had to say “same sex” instead of “homosexual” in order to have a chance of securing funding. No one thought that was right; it colored funding requests and constrained research.

This is much worse.

A spokesman for the Department of Health and Human Services, speaking to STAT News on Saturday, tried to downplay the already vocal pushback on the ban. Of course, if you actually read what he said,… “The assertion that HHS has ‘banned words’ is a complete mischaracterization of discussions regarding the budget formulation process,” [Matt] Lloyd, from HHS, said in a statement to STAT. “HHS will continue to use the best scientific evidence available to improve the health of all Americans. HHS also strongly encourages the use of outcome and evidence data in program evaluations and budget decisions.”

Not only Lloyd he not deny that there was a banned word list, but he himself did not actually say two of the banned phrases, instead talking around them. Lloyd could have easily said “HHS will continue to use the best science-based evidence available…” or to say that “HHS strongly encourages the use of evidence-based data…” And yet.

The words we use drive funding, manage expectations, even constrain who we think about and include. This ban is nothing more than an assault on reproductive rights, equality, and quite literally, diversity.


BNN Strikes Again: Raped or Not?

A long, long time ago, I wrote about BNN’s controversial “decide who gets a kidney” reality TV show “The Great Donor Show.” In the end, rather than being one terminally ill person deciding who got her kidney, it was one actress “highlighting the plight” of the families who desperately needed kidney transplants, in an effort to push forward dialog on transplantation laws in the Netherlands.

I remain skeptical of the efficacy of the concept, and firmly in the “that’s pretty damned tasteless” camp.

Still via Central European News.
Somehow, I think BNN’s latest is going to have a hard time even crawling out of the muck to “damned tasteless”: their new debate show, Raped or Not?

This time around, the TV show is going to air re-enactments of rapes to male and female panelists, and will then ask them if they agree with whatever verdict was reached at trial.

Producers say

the alleged sex attacks didn’t involve incidents where “someone is dragged into a bush” and attacked, but was instead about “murkier” cases. “Those are personal dramas. One says rape, the other sees it as an innocent sexual encounter. Our show is about that grey area.”

Yeeeaaah about that.

There’s this persistent narrative of the grey area in rape and assault cases, which basically comes down to “she said no, he heard yes.”1 Oh, it might be vaguer – it might be she pushed and struggled and he overcame her, it might be she said no, he didn’t listen, she was afraid and so went along with it, it might be something as simple as “the power differential was so great, she didn’t think she could say no without facing other repercussions.” Repercussions that come about specifically because of the quaint belief in these “grey areas” – that somehow, we should be able to talk about whether an employee really “wanted it” when, say, she was called to her boss’s office and he was there in his boxers.

But what we actually know about that “grey area” is that it’s really only a grey area to the men who will rape – especially those who admit to rape, so long as you don’t say rape. Back in 2009, Thomas MacAulay Millar of the Yes Means Yes! blog, looked at two large-sample surveys of undetected rapists. Turns out, as long as you don’t use the word rape, plenty of guys will admit to it – and these aren’t the oogyboogy stranger rapes, but the “grey area” date rapes and nice guys and friends of friends, raping. “The rapists who are out there are mostly using intoxication, and mostly attacking victims they know.”

And more importantly, especially to this idea of “grey areas,”

the sometimes-floated notion that acquaintance rape is simply a mistake about consent, is wrong. The vast majority of the offenses are being committed by a relatively small group of men, somewhere between 4% and 8% of the population, who do it again … and again … and again. That just doesn’t square with the notion of innocent mistake.

In case you’re holding out hope that Millar’s data is nearly a decade old, well. Let me just dash those hopes on the nearest set of pointy rocks; at the end of 2014, researchers from the University of North Dakota found that 1/3rd of surveyed college men say they’d rape if they could get away with it – again, as long as you don’t call it rape. The minute you use “the r word,” oh no, fully 2/3rds of those men all turn into good boys who would never ever.

What we have known since the 1970s, when people started looking beyond convicted rapists in prison (“the generalists who will steal anything, including sex”) and out into the community, at the specialists who get away with repeated assault: men are open about repeatedly ignoring consent, and although they have raped, these men don’t believe they are the problem.

But they are, and paying homage to the “grey area” and then putting up rape cases – cases that went to court, which is rare no matter what country you’re in – to discussion of “did they get this right?” only does one thing: it underscores, rather than undermines, the notion that there is some grey area of assault, where perception counts and one person can believe they were assaulted and another thinks they had a consensual encounter. The research is clear: that doesn’t exist. All that does is a bunch of men who know they shouldn’t admit to rape, not that they shouldn’t rape.