Inclusion is the Core of My “Radical” Feminist Agenda

I’m tall, I’m a natural blonde, and I have green eyes. I’m also anywhere from “pleasantly plump” to “obese whale” depending on your scale of things, and I’m invisibly disabled. Needless to say, I receive a lot of comments about my body, both directly and indirectly, on a daily basis, and am frequently reminded of how I am–or am not–valued on the basis of what my body looks like and what it can or cannot do. I “should” be thinner, healthier, ignore the people who think I should be thinner, healthier; I “should” embrace who I am, change who I am, be a ‘better’ version of who I am, achieve health at any size-the list goes on, and on, and it often seems and feels like everyone has, and feels comfortable, voicing their opinion on what my body should look like and be capable of.

Would there be any less pressure if I wasn’t fat? After all, some people might want to argue that the comments come because of my weight, and the fact that I am so close to “the ideal” for a woman (tall, blonde, fair) that if I could get get thin, it’d all be fine.

Well, Cassey Ho’s recent “The ‘Perfect’ Body” video should put that idea to rest:

And if I were thin, I think it’s safe to say that the so-called “radical feminists” would simply say that being a thin, tall, blonde, fair woman is merely contorting myself to a body approved by a patriarchal/porn culture, and criticize me for that, as well. I suppose I might get “points back” for being disabled, but who knows.

Are you getting the idea that I can’t win? Because if I can’t win–if I can’t be my normal hair colour, my normal eye colour, my normal skin colour, all of which are considered damned near ideal for way too much of the world, and thin or fat or anywhere in between-then how is anyone else supposed to win?

Playboy (yes, really) takes this on in their post on Laverne Cox’s nude photo for Allure and the frankly ugly response from “radical feminist” Megan Murphy. To quote Noah Berlatsky, author of the Playboy piece,

Murphy reacted to the photo just as Cox suggests that people often react to black and trans women — with disgust, prejudice and horror. In a short but impressively cruel post, Murphy sneers at Cox for attempting to achieve a “‘perfect’ body as defined by a patriarchal/porn culture, through plastic surgery, and then presenting it as a sexualized object for public consumption.”

She scoffs at the idea that trans women who take hormones or have surgery are accepting themselves. Murphy suggests that trans women are “spending thousands and thousands of dollars sculpting their bodies in order to look like some cartoonish version of ‘woman,’ as defined by the porn industry and pop culture.

My first thought, reading both Berlatsky and Murphy, is that this comes down to a question of how we define self. Berlatsky, along with most who support trans folks, seems to accept the idea that “who we are” can be a mismatch; your internal notion of self doesn’t match your external representation. For Murphy, it appears that you’re supposed to merely integrate the internal and external, and that if your internal notion of self doesn’t match your external being, that’s the fault of society for placing unrealistic notions on the external being.

Now, this notion of social expectation shaping external being is definitely accurate–if the mismatch you experience is what society tells you your external self should be and what your external self actually is. But where Murphy and most “radical feminists” seem to fall down is comprehending that there’s another option here, the one that trans folk fall in to, where your internal notion of self doesn’t match the assigned external self. When that happens, it’s not enough to say “ignore society” because the dissonance isn’t coming from society; there can, after all, be strong, physical differences between genders that have nothing to do with society and everything to do with biology.1 emp_v_obj-finalSociety might embrace fashion that emphasizes child-bearing hips, for example, but society doesn’t create those child-bearing hips. That’s biology.

But my first thought was a bit too shallow, on reflection. While this is all certainly true-Murphy and her ilk are simply not capable of dealing with the nuance of what it means on a base level to be trans-what it actually comes down to isn’t that, at all. What it comes down to is “radical feminists” not understanding the difference between sexual empowerment and sexual objectification. Which, to be fair, is a difficult concept to understand–but I don’t think I’m totally out of line to say “if you’re going to write critiques about bodies and empowerment, you’d best know what you’re talking about, first.”

I find that the cartoon by Ronnie Ritchie, posted by Everyday Feminism, really nicely captures the necessary nuance of power dichotomies (see right).

My problem with the “radical feminists” is pretty simple, and it’s neatly illustrated by the above response to Cox and a lack of understanding agency and consent: they’re drawing such a tiny, tight boundary around what it means to be feminist, that most people fail. Perhaps even more damning, that tight boundary contains body policing–something that most feminists, one hopes, would tell you is decidedly anti-feminist.

I place “radical feminist” in quotation marks because I don’t actually think they’re radical or feminist. I think that, for the most part, they’re scared women who are trying to define themselves in a way that maximizes their own power, and they do that by trying to keep it to themselves rather than share it liberally–another hallmark of what I think feminism should be about. In fact, I think that along with trusting adults to their own agency, about the most radical thing any feminist can do is include everyone.


CRISPR and the Amoral Othering of Chinese Researchers

I’ve been under a rock for the last week or so, first at a conference in San Diego, and then fighting off a nasty combination of strep throat, laryngitis, and double ear infections. (So when I say “under a rock,” I mean hiding under the blankets in my bed, spending most of my time sleeping.) So while bits and pieces of the “CRISPR/Cas9-mediated gene editing in human tripronuclear zygotes” paper published in Protein & Cell by researchers from Sun Yat-sen University in Guangzhou, China, made its way to me, it wasn’t until today I felt well enough to say anything about it–mostly because I don’t expect what I have to say will be very popular. So without further adieu, a few unpopular thoughts on Zhou, Huang, et al’s paper.

Claim
The paper was rejected by Nature, Science, other top journals, for being unethical.

Hah. Ahem. Look, if Nature, Science, et al, want to make that sort of “it’s unethical we can’t publish it” claim, they might want to do so when the ethics-inclined folks who’ve been around a while are, I don’t know, busy, off tilting at other windmills, at a conference in Bermuda, or something. Because history here isn’t really kind to the so-called “top journals” when it comes to publishing unethical material; see, for just a really short course on it, the Fouchier and Kawaoka H5N1 gain-of-function debacle. “Top journals” were burned by the response to the H5N1 enhancement debacle, and were flat-out caught unaware that such a thing as “bioethics” had enough of a voice to be heard. They don’t want to be caught again, so they’re walking away from anything possibly controversial right now, and the debate over CRISPR/Cas9 has already been going up in the flames of controversy.

In short, any time any “Top Journal” says “we’re concerned about the ethics” you should actually read “we don’t want to be involved in any mainstream media controversy.”1 They learned this with H5N1 GOF issue to the point that these days, any debate over GOF/dual-use research of concern/potential pandemic pathogen research is met with a chorus of “la la la can’t hear you publish what?”

Claim
OH MY GOD THE CHINESE ARE MAKING GENETICALLY MODIFIED HUMAN BEINGS!

Fu_ManchuReally? Is it time for the great Bondsian bad guy freak-out? Do you suppose the folks who are making this claim picture Zhou, Huang, et al, twirling Fu-Manchu moustaches while wearing Zhongshan suit-inspired lab coats as they look upon an army of genetically modified super humans being incubated in chained women who were discarded as babies for being female? How many tropes do you suppose are shoved into this image of evil?

Again, take it from an old-timer: “we have to do it before the Chinese” has been a rallying cry for an awful lot of the science that falls at the intersection of bioethics and transhumanism. Why? Because “the Chinese” stands for “people who don’t have our values and belief systems-they’re DIFFERENT.” We’ve heard it with cloning humans, dual-use research of concern, with just about everything, and now we’re hearing it with CRISPR/Cas9: “we” have to do it before the big scary Not Western people do it!

Except some researchers from China do it and what–it’s suddenly “not ethical” because they’re Chinese? Pundits, scientists and otherwise, are freaking out not because “omg someone edited embryos with CRIPSR!” but because “the Chinese” have. (And do you note how most folks are just saying “the Chinese” as if the paper has no authors? See: creating a big bad menace in your mind.) And unfortunately, this excuse isn’t limited to Top Journals rejecting the paper for claims of it being unethical. The concern shows up in Paul Knoepfler’s blog, as well:

It is worth noting that the current study had institutional ethical approval according to a statement in the paper:

“This study conformed to ethical standards of Helsinki Declaration and national legislation and was approved by the Medical Ethical Committee of the First Affiliated Hospital, Sun Yat-sen University. The patients donated their tripronuclear (3PN) zygotes for research and signed informed consent forms.”

Would an institutional review board in another country such as the US have given the green light to making GM human embryos? I don’t know.

The emphasis there is mine, and it’s one I dislike making,2 since I do consider Paul a friend. But what this shows is just how pervasive the idea that “the Chinese aren’t moral like us” is: Zhou, Huang, et al, swore to the study conforming by ethical standards required by the Helsinki Declaration as well as their own national legislation, noted it was approved by a MEC–and people are still questioning whether it was ethical enough, because they’re Not Western.

Which ties into the third issue people seem to be having,…

Claim
OMG the Chinese did CRISPR/Cas9 editing this is so worrying aren’t you bothered YOU SHOULD BE BOTHERED!

Well, no, I’m not bothered by the paper. I am bothered that Protein & Cell did such a rapid turn-around on peer review for the paper, but I have that concern whenever any journal does such “rapid turn-around” (and you’re kidding yourself if you think this is an isolated event-it’s very much not). Nor am I bothered that “the Chinese” did this particular CRISPR/Cas9 experiment, just like I’m not bothered by human embryonic stem cell research. The researchers (and again, let’s think for a minute about the alienating and Othering going on by insisting on referring to the folks behind this research as “The Chinese”) answered some pretty important questions about the immediate applicable functionality of CRISPR/Cas9 editing–which is especially important given the recent moral panic going on about the technology as a whole.3 In short, they learned two major pieces of information that have direct implications for any conversation about future use in humans–and bans on the technology.

  1. CRISPR isn’t 100% accurate, and sometimes “missed,” inserting DNA in the wrong place. This is problematic, because instead of offering a cure for $Whatever, it can actually create a new problem. So, not a benign “oops.”
  2. Even the embryos that were edited correctly by CRISPR ended up as mosaics-in other words, it wasn’t a universal fix. This, as Carl Zimmer explains, means that it’s a lot harder to take a single cell from an embryo and “verify” that it’s been fixed, and it’s hard to know whether or not the fix will manifest, pass down in the germline, etc.

In other words, as Zhou, Huang, et al say themselves: their “study underscores the challenges facing clinical applications of CRISPR/Cas9.”

Claim
But what about the embryos?!

Zhou, Huang, et al used tripronuclear (3PN) zygotes for their research. These zygotes occur in upwards of 5% of IVF attempts, and are discarded because, while they might develop into blastocysts in vitro, they absolutely do not develop further in vivo. In other words, these are non-viable creations4 with a built-in suicide switch: they’re never going to develop into bouncing babies, Chinese or otherwise. In fact, it was because of the very specific concerns over CRISPR/Cas9-mediated gene editing in normal embryos that Zhou, Huang, et al used 3PN zygotes: it says so, right there in the paper. (So what was that about ethical concerns, again? You can’t really say they weren’t thinking about it when they put it right there in the paper. Repeatedly.)

If I were to be moved by the creation of these 3PN CRISPR creations as somehow unethical, then wouldn’t I also be obligated to find human embryonic stem cells unethical? I don’t,5 so in practicing a policy of consistency,…

Conclusion

Look, the panic over the CRISPR paper comes down to this: people somehow believe that there’s “moral control” if Westerners do this research. To which all I can really say is, DURC folks? Maybe y’all missed the boat on how to get traction on this issue, and should have run around all a-panic, OMG THE JAPANESE!6

More seriously, the history of science and medicine should underscore and emphasize the fact that “like us” does not mean “moral and ethical.”

As I was pointing out to Razib Khan and others on Twitter, I was around during the OMG DOLLY NOW WE’RE GOING TO CLONE HUMANS AND THE END IS NEAR panic, which as Khan noted, hasn’t happened–or at least, the Raelians haven’t made us believe. Will the same happen to CRISPR/Cas9-mediated gene editing?Gattaca It’s hard to say, because the technology is so new, and whether or not we’ll be able to overcome random DNA insertions and mosaic, chimeric embryos is down the line enough that it’s speculative.

But whether we’re on our way to a GATTACA-esque future or not, one thing is certain: the first step to any dialog over CRISPR/Cas9-mediated gene editing isn’t going to be an Asilomar-like conference. It’s going to be to stop demonizing “The Chinese” as being a-moral, immoral scientists.


Edited to add: BTW, this was originally a stream-of-conscious Twitter rant that I was goaded to turning into a full blog post. You can read the original, see comments, etc, starting here.


Help Stop Ebola with this One Simple Trick!*

I mean, other than donating to aid organizations that desperately need help, that is.

See, yesterday, it was revealed there was yet another Western person being treated with ZMapp. Yep, that experimental drug that the world supposedly ran out of last week. Except, apparently, when there’s a Briton involved, in which case, someone checked behind the couch cushions, NIH thought to look in an unused cold storage closet, or who knows–because that’s the problem. The world now knows British man Will Pooley received at least one dose of ZMapp and will receive more, and no one has explained how the Royal Free Hospital happened to stumble across these doses that theoretically didn’t exist. In fact, all they’re saying is

[T]he team treating the nurse had sourced the drug through its clinical networks with the help of international colleagues.

-GIF-suspicious-William-Shatner-James-T.-Kirk-Star-Trek-GIFWell, that’s not at all suspicious. Clinical contacts? International experts? Sure, that doesn’t sound at all sketchy.

See, the thing is, we’re going back to risk communication, international relations, and the people who are dying en masse in affected countries who’ve been told that there is just no drug left. When you say “nope, sorry, no drugs left, we are all and completely out of ZMapp” and then manage to suddenly find some when a white British guy needs it, you foster a climate of mistrust–something that’s already a huge issue that doesn’t really need further fuel on the fire.

Which is why, at this point, when these random unaccounted for surprise stores of ZMapp are discovered, there needs to be transparency about where it came from, why we didn’t know about it, and why it was suddenly found. Because otherwise, it sure looks like the double standard of treatment for Westerners vs. native Western Africans is continuing to happen.

(*How does this help to actually stop Ebola? Right now, one of the bigger issues being seen in countries like Liberia and Sierra Leone is a complete lack of trust in Westerner health care workers who are trying to help. Reinforcing the idea that there is a cure for Westerners when people in Liberia, Sierra Leone, and Guinea have been repeatedly told there isn’t a cure for them is going to continue to emphasize this lack of reason to trust, and that trust is an extremely crucial step to all of the very basic things that need to be done to stop this outbreak from spreading any further. At this point, I’m leaning pretty hard on it being unethical for doctors or journalists to report on ZMapp use without also identifying the source of the drug.)

No, American Doctors, You Don’t Need Tyvek In Case of Ebola

One of the more interesting aspects of the constant media coverage of the latest Ebola outbreak has been watching how developed nations like the United States, Britain, and Canada assume that the entire world is Just Like Them. The Seattle Times had a charming example of this yesterday, with American doctors questioning the CDC guidelines for how to care for an Ebola patient in America. An example of the ignorance on display comes from Tulsa, Oklahoma emergency physician Justin Fairless, who says that health care workers in West African nations

are wearing the highest level of protection, but the CDC recommendation lets us go down to the lowest level of protection.

Now, the CDC has repeatedly said that caring for patients in African nations is quite different than caring for patients in America, Canada, other developed nations, but apparently Dr. Fairless and others need a pictorial show-and-tell to understand that not everyone lives and works in a state-of-the-art world.

But first, a bit of description to set the stage for the pictures you are about to see. (Note: There are no sick or dead bodies in the following photographs.) This is from a Pulitzer Center on Crisis Reporting report on maternal/fetal care in Guinea, published in February of 2014, before the international community was aware of the Ebola outbreak:

“The biggest problems at Donka are no electricity, no water, no equipment, no sanitation and very high rates of infection,” said Bintu Cisse, adjunct midwife supervisor, who has worked at Donka National Hospital for 20 years … External support provides some operational assistance, but Donka lacks basic facilities due to the inefficiency of Guinea’s under-performing infrastructure … Inside the maternity ward operating room, Cisse pointed out that the equipment did not work and doctors used suspended basins of water and a mixture of chlorine to sanitize. The main light sources were open windows—outside garbage was burning.

Cisse is describing the largest medical center in Guniea, Donka Hospital, which is also the university teaching hospital for the country.

This is what their isolation unit looks like:

Donka Hospital Isolation Tents. Cellou Binani/AFP/Getty Images.

Donka Hospital Isolation Tents. Cellou Binani/AFP/Getty Images.

Those are tents. Here’s what those tents look like on the inside:
DonkaIsolationWard-Open

When patients are inside, they are lined up on cots, one after another. There is nothing separating the patients from anyone, or anything. There is no airflow system–isolation wards in regions where Ebola is active tend to work by setting up large barriers to prevent people from getting close enough to worry about contagion; this could be large plastic sheeting, it could be fences that indicate the line at which people should not pass.

This is what an isolation unit looks like at your average, developed world, fully-equipped hospital:

Isolation room at Wellington Hospital, New Zealand.

Isolation room at Wellington Hospital, New Zealand.

So, as you can see, Dr. Fairless, and others, things are just a little bit different in countries where the GDP is more than USD 6 billion a year.

A MSF worker suits up to care for Ebola patients.

A MSF worker suits up to care for Ebola patients.

The major difference in treatment, aside from already-discussed issues, is who is in isolation. More specifically, in places like Guinea, Liberia, and Sierra Leone, while patients are isolated from other people in order to curtail infection, the health care workers are the ones “in isolation”–they’re the ones who are kitted up in bunny suits, in full Tyvek, layers of gloves, and the whole nine yards. Because: see above. The effort here is to keep the HCW in a protective environment to limit transmission to the worker, because it’s impossible to keep the patients inside a protective environment, due to the economy, the lack of infrastructure, the lack of ability because there’s no technology, there’s no power.

Isolation units in America and other developed countries, on the other hand, function to keep the patient inside isolation; patients are isolated from others to curtail infection, and that includes being “in isolation”: that is, the protective bubble that bunny suits and Tyvek create for HCWs in Guinea, etc, is extended around the patient in the form of negative air pressure rooms and glass walls.

In that sort of environment, the basics of gloves, gown, and mask are more than sufficient to care for a patient with Ebola–or any other highly infective agent. Which is why that’s what the CDC recommendations are; because technology and care levels are different, and the basic approach to isolating and isolation can change.

It’s also worth remembering that bunny suits and Tyvek weren’t always around when people were fighting Ebola. Here’s what Peter Piot was wearing in 1976, when Ebola was first recognized:

Peter Piot wearing protective gear in Yambuku, 1976.

Peter Piot wearing protective gear in Yambuku, 1976.

That’s how the outbreak was stopped in 1976. In conditions that in many ways were worse than in the pictures shown above.

The doctors and other health care workers in that Seattle Times piece should be ashamed of themselves, demanding bunny suits and Tyvek and full protective gear when not only is it unnecessary, it’s a waste of money. But more than that, and even more than the myopic view of the world that appears to assume everywhere is just like their tidy and neat and well-staffed and well-maintained medical center, it illustrates the continued “me me me” reaction people in the developed world have around Ebola.

…after all, you don’t hear anyone suggesting that full isolation suites be sent to Guinea, or Sierra Leone, or Liberia, so that those countries can revert to the simpler CDC recommendations, do you?

Childless: My Joy is Another’s Grief; Don’t Conflate the Two

This morning, CNNThanks, Tara, for bringing it to my attention. Or, “thanks.” ran a piece on misunderstandings and stereotypes of childless women called “Check your ‘cat-lady’ preconceptions about childless women.” Naturally, it’s full of preconceptions, misunderstandings, and stereotypes of childless women. In particular, the women are still discussed by their relationship to/with children, and the voluntarily child-free are conflated with the involuntarily childless and uncertain.

Let’s take a quick walk through the women interviewed for this story:

  • Grell Yursik, 35: she and her husband have not decided whether they want to have children;
  • Laurie White, 43: refers to herself as “accidentally childless”;
  • Melanie Notkin, 45: says she has circumstantial infertility because she’s single and discusses “the pain and grief over not having children,” promotes maternal instincts of childless women;
  • Kitty Bradshaw, 35: heeded advice to wait to have children (portrayed as bad advice in the story), still dreams of having them and has moved to LA to find a husband;
  • Sheila Hoffman, 64: conscious choice to be child-free.

Women, still defined by the activity of their uteruses. Still defending their ability to be maternal,“We are maternal … we get to exercise our maternal muscle on the children we love.” still looking for someone to create a child with,Note: not a family. You create your family when you marry, when you adopt, when you choose the people you want your children to call aunt and uncle. still using morally loaded language to justify their childless state as an accident of fate.

In fact, in an article ostensibly about the great life of childless women, four of the five women interviewed discuss wanting to have children and feeling that the circumstances of their lives simply don’t allow it. There are 33 paragraphs in the story, and three–the last three–talk to and about a woman, Sheila Hoffman, who actively made the choice to not have children. None of the paragraphs on Hoffman discuss her choice or how it makes her feel, only the need for role models for women that are not mothers. This, despite the fact that the DeVries Global white paper that at least in part prompted Wallace’s article showed that a full 36% of the 1000 women without children interviewed didn’t actually want children (and another 18% were on the fence).

So why did Wallace’s article spend absolutely zero time on this theoretically large segment of the American population?

Because it’s still not considered acceptable for women to not want children. Even the term being coined for these women, “Otherhood,”Don’t you dare. Yes, you. I’m looking right at you. emphasizes the Otherness“Othering”, quite simply, is taking a person or a group of people and classifying them as “not like us.” Most of the time, this alienating step is done in conjunction with the assumption of “less than us”; it’s the mindset behind a lot of nasty bits of colonialism and sexism alike. of women who have decided to skip having children.

What is acceptable is for a woman to want to have children, but to ruefully conclude that she cannot because she is single, cannot afford IVF treatments or being a single mother,Fun fact: I was once told, while studying bioethics, that I should see if any company would harvest and freeze my eggs for me, for publicity, so I didn’t “lose the chance” to have kids–even though I have been clearly “not having children” for at least 18 years. or has lost her chance for reasons running the gamut from missed love to missing love. Women can and should be apologetic and sad about being childless; it is an accident, or a tragedy, rather than an empowered choice. And that’s reflected in Wallace’s article.

But beyond being infuriating for those of us–a third of the women sampled!–who are cheerful, happy, and decisive about our decision to not have children, the grouping of women who do not have children with women who do not want children is hurtful to the women who do feel that loss in their lives. These experiences–of feeling circumstantially infertile, of accidental childlessness, of deeply wanting a child–should not be lumped in with those of us who happily hug our IUDs, pills, and/or condoms whilst skipping gleefully down the Marvel toy aisle thinking “all for me, all for me.”Is not having children a selfish choice? No more selfish than having children. Being infertile, circumstantially or medically, is a serious emotional wound that should not be conflated with a joyful and intentional life choice.

Write about the pain.

Write about the joy.

Don’t write about them at once, because that only does a disservice to both.