Life as an Extreme Sport

Shame, Stigma and Angelina Jolie’s Breasts

As reactions continue to race around the internet about Angelina Jolie’s double mastectomy and reconstructive surgery – the actual discussions, not the Monday-morning quarterbacking of her decision or the utterly vile “but what about her boobies” reaction from that particular subgroup of men who manage to amaze me by their continued ability to manage basic functions like breathing – I’ve been sent links. And more links. And then a few more. Most are relatively easy to dismiss because they’re quarterbacking a personal decision or they’re vile, but then you get the ones that tiptoe closer to decent – and they still have problems.

One that’s been flying around the internets today is the Maria Konnikova piece on Salon. I’m actually not terribly fond of this piece, or other pieces that hinge their complaint on the cost of testing and Jolie’s supposed privilege by virtue of her wealth. For one, let’s put the cost of testing squarely where it belongs: on the fact that Myriad owns the patent for the test (something that is being challenged in front of SCOTUS this June).

Secondly, almost no one remembers that the Affordable Care Act considers BRCA1 and BRCA2 tests to be part of preventive care, and that by January 2014, it must be covered for everyone, period. Yes, the pre-existing condition limitations and grandfathered insurance clause limitations means some women won’t have coverage for the test between now and January, but it’s not the doom and gloom exclusionary process that seemingly everyone wants to focus on when it comes to cost.

Finally, and most importantly, the notion of reducing stigma and shame by simply talking about these things – and in Jolie’s case, taking ownership of a body that has been extremely sexualized in media and popular culture – is incredibly important. In particular, even though we’ve moved society to a point where people talk about breasts and cancer together, it’s still in a “race for the cure” dialog, rather than in mastectomies and surgeries and things that shame. For example, within a day of Jolie going public about her mastectomies, Zoraida Sambolin (CNN) announced her own breast cancer and the mastectomies she’ll be having in June – and she credits Jolie for her decision to go public with her own health concerns.

This is dialog that’s important. It continues to de-stigmatize and remove shame from very basic aspects of women’s biology, and doing so is only a good thing: we need people to be able to talk openly and honestly about medical issues, illnesses, and diseases that affect women, not just men, and the sooner we can normalize aspects of the dialog that include frank discussions of biology and body parts in non-sexualized terms, the sooner we can embrace the idea that a woman – and her sexuality – is more than her breasts.

crunchy lambs, stigmata style

I’ve had this weirdly crunchy, industrial triphop version of “Mary Had a Little Lamb” stuck in my head all day, made all the weirder by the fact that I’m pretty sure it only exists in my head, and is the result of a weird confluence of American Idol, Gwen Stefani, and searching madly for a stuffed lamb this morning. (An hour, people! It took me an hour to find a stuffed lamb. At Easter!)

On top of that, life has been poorly balanced on my part of late. I’m hoping my next hop across the country (tomorrow) will perhaps allow me to achieve a bit of what I’ve lot, namely getting back towards meditating on a daily basis. While I hope, I’m not hopeful – if that makes any sense.

For a large part of this afternoon, I was overcome with the urge to put the iPod on, turn up the volume and roll down the windows, and just drive. The heavy promotions for Fox’s new Nathan Fillion vehicle, “Drive”, hasn’t really helped much, and occasionally breaking through the Mary Had a Little Lamb (Stigmata Remix) is snippets of the Kaiser Chief’s Modern Way, overlaid by TV Voiceover Man encouraging me to drive, just drive.

There’s no point in sitting
Going crazy on my own
It’s the only way of getting out of here
It’s the only way of getting out of here
This is the modern way
Of faking it everyday
And taking it as we come
And we’re not the only ones
Is that what we used to say
This is the modern way
I know where I’m going
And that we are in the knowing
And I will stop at nothing
Just to get what I want
It’s the only way of getting out of here

A Quick Note to Senator Markey

I’m cranky. The water has been out at the house for almost 24 hours now; a water main broke just outside our apartment yesterday afternoon, and appears to be spreading through multiple city blocks, now. An historical building undergoing renovations has turned into a swimming pool, there are reports of streets buckling under the now-gushing water geysers, and my joking, yesterday, about a Hellmouth opening here suddenly seems a little more on the nose.

So I wasn’t in the best headspace to read that one of my Senators, Ed Markey, is not only supporting the 21st Century Cures Act, but is pushing for the additional “opioid crisis” addiction funding – with no thought to the harm that causes chronic pain patients, and the utterly asinine blindness to funding research into pain and other pain treatment modalities. So I jotted off a quick email, and wanted to share it here:

I am deeply disappointed that, with the 21st Century Cures Act, not only have you proudly pushed funding that supports the opioid panic (and publicized it), Senator – you are contributing to the stigma and difficulty in accessing health care patients with chronic pain face. Nowhere in any of this “omg opioid crisis” panic funding do we see what REALLY needs to happen: funding for research into chronic pain and other treatment modalities. You focus on addiction at the expense of patients in genuine pain, and you’re doing that because addiction makes a better media story than pain. While I have been surprised to learn of you – you are frequently overshadowed by Elizabeth Warren in the national media – I am now sad to say I’m disappointed in you, and beyond losing respect for your work, I question your ability to accurately and adequately represent constituents like me.

There are many other problems with the 21st Century Cures Act, which you can read about at Health Affairs (among other places, including Stat News, if you need a more local read), but in this measure, you are alienating constituents with chronic pain who, research shows, are both at low risk for addiction and are the most harmed by pushes like these. MA already has restrictive and difficult limitations to access that constrain and minimize the quality of life of disabled people. Additional funding and penalties towards abuse of illicit drugs (and conflating those with prescription drugs) harms everyone and helps no one.

I am disappointed, today, to call you my senator.

Richardson & Almeling on the CDC’s Pre-pregnancy & FASD “Guidelines”

Although it’s not the first thing you learn in ethics, the idea that you’re not going to be popular probably should be; it really does make life a lot easier. After all, a large part of the job of the ethicist is to be unpopular:

  • no, you can’t modify that flu virus so that it’s more contagious and more deadly than the lovechild of smallpox and the Spanish flu;
  • yes, it’s okay that this person wants to die;
  • no, you can’t just put fecael microbes in open brain wounds;
  • sorry, no, the science doesn’t support your claim;
  • who will the car hit;
  • you fired everyone NOW;
  • does the benefit justify risk; and so on.

You get the idea.

So I wasn’t terribly surprised to face the typical backlash when I noted just how unscientific, shaming, stigmatizing, and plain wrong the CDC’s recent “treat every woman[note]This is one of those areas where policy work and activism clash.The CDC frames their infographic in terms of “women,” but that’s certainly exclusionary and ignorant, given the fact that there are people who identify as men who do have uteruses, and could carry a pregnancy to term.[/note] as pre-pregnant”[note]A term that is offensive all in itself-women are more than just their ability to reproduce, an idea I go into more here.[/note] declaration that no person with a uterus should drink[note]Oh hey, a day later, the CDC has changed their graphic away from “any woman is at risk of violence from drinking” to include men. Nice try, CDC, but the internet is forever.[/note] unless 100% certain there’s no uterus-crasher in residence was–but it’s always nice when folks who have the respected PhD after their name (and are at Ivy League universities) join the chorus.

I recommend reading Richardson and Almeling’s op-ed in it’s entirety, but here are the choice pieces:

The CDC’s overly broad advisory damages its credibility as a source of clear, balanced advice about health risks. A risk may be “real,” but it may not be large or well substantiated. The CDC claims that “drinking any alcohol at any stage of pregnancy can cause a range of disabilities” for a woman’s child.” Yet a balanced review of the scientific evidence does not support such unequivocal claims. In fact, medical research suggests just the opposite. For example, the Danish National Birth Cohort Lifestyle During Pregnancy Study demonstrated that moderate drinking during pregnancy carries no long-term risks.

CDCBeClearFirst, the CDC needs to be clear that science on the risk of alcohol during pregnancy is far from settled. Any advice about reproduction should respect the autonomy and intelligence of women by presenting evidence in its full context. Public health officials should provide perspective about the size of the effects relative to other common risk factors. And they should be straightforward in describing the evidentiary base for health advisories.

The CDC can regain credibility in this realm by providing information to women and men that details the relative risks of various behaviors, as well as the state of scientific debate regarding the evidence supporting these assessments

The CDC’s mission is to identify and address clear and present dangers to the public health. As such, their credibility is literally a matter of life and death … Issuing guidelines with all the nuance of a sledgehammer only damages the public’s trust in federal health recommendations.

There are possible risks to drinking while pregnant, and women should be told what those risks are. But they’re not clear-cut, they’re not well-understood, and there’s no guarantee that abstaining from alcohol means a baby won’t be diagnosed with Fetal Alochol Spectrum Disorder; like many disorders, it’s a diagnosis of exclusion, and the criteria for diagnosis does not require confirmation of alcohol consumption during pregnancy (and in fact, at least one paper in Pediatrics suggests that if a woman has a child diagnosed with FASD and says she abstained during pregnancy, she must be lying about her drinking habit).

But there are a lot of risks to women while pregnant, and unless you’re advcating that women be padded in bubblewrap and never let outside of a padded room while pregnant (which in itself is probably a risk for something), then pregnancy, like life itself, is about balancing risks, benefits, and rewards. In order to make decisions in an accurate risk/benefit analysis, women first need to know what the science, not a sledgehammer of paternalistic unscientific fearmomgering.


One Key Question: Why “Would You Like to Become Pregnant in the Next Year” is a Bad Idea

Note: I wrote this last year when the One Key Question initiative in Oregon was being discussed, and pitched it to an appropriate publication. Unfortunately, the editor of that publication somewhat maliciously string me along and sat on it until it was no longer timely, and it’s been sitting in my sads folder since. With the recent CDC recommitment to the notion of pre-pregnancy, I decided this should at least be published on my blog.


A “simple, routine question” advocated by the Oregon Foundation for Reproductive Health is a great way to alienate and further disenfranchise women who are childfree.

A new piece on Slate discusses one of the most alienating ideas I’ve read in a while, and I wrote about the Hobby Lobby SCOTUS decision last week. In a nutshell, it argues that for effective and proactive reproductive health care needs, primary care physicians should ask a woman, at every visit, if she would like to become pregnant in the next year.

OKQOn the surface, the One Key Question Initiative, by the Oregon Foundation for Reproductive Health, may seem like a good idea. Many women have access to a primary care provider, but do not see OB-GYNs with any regularity. And of course, discussing reproductive and contraception options with a patient should be a basic of yearly, preventive, or wellness exams. The problem is not in discussing reproductive and contraception options, but instead in the framing of the question: would you like to become pregnant in the next year?

If I heard this from my doctor at every visit, I would change doctors. I expect my doctor to listen to me, and expect my doctor, after the first time I explain that I am childless by choice, to respect my decision. Asking me, repeatedly, if I would like to become pregnant in any time frame ignores my stated preference and decision. It falls into the cultural stereotype that women must want children, and that if they’re asked enough, if they get old enough, if they just meet the right man, they’ll change their minds.

Statistics indicate that I’m not alone in my desire to not have children. In fact, a third of women in the “acceptable childbearing age” bracket of 20-44 don’t have children,1 and 20 percent of women won’t have children.2 Many of these women are involuntarily childless, either for medical reasons or circumstance, but a recent survey by DeVries Global suggests that as many as 36 percent of those who are childless are voluntarily childless.3 As such, medical appointments should not be used as an opportunity to emphasize the stigma of the choice not to have children.

And make no mistake: there is still a significant stigma to choose to not have children. (One of my favorite paper titles ever is “Women without Children: A Contradiction in Terms?“) Women are judged for not having children; they are selfish, immature, refuse to grow up. The crazy cat lady has become a modern boogieman to scare women with. Headlines scream “The Trend of Not Having Children is Just Plain Selfish” (The National Post), women are assured it’ll be different when it’s your child, and assured they will regret their choice to remain child-free. Some of these beliefs are so deeply engrained into culture that women under the age of 30 have a difficult time finding doctors who will tie their tubes; a persistent, paternalistic attitude that doctors know better than women about their reproductive desires, which Slate itself covered in depth in 2012.4

We’ve had this conversation before, when 2006 federal guidelines resulted in women of reproductive age being labeled “pre-pregnant” and treated as if they could fall pregnant at any moment. As bioethicist Rebecca Kukla noted, the idea of pre-pregnancy literally treats the non-pregnant body as on its way to pregnancy, with non-pregnancy seen as a fleeting and temporary state; it also reinterprets primary care for women into reproductive care.5 The One Key Question Initiative brings us right back to the pre-pregnancy focus on what some people have dubbed “bikini medicine” – all attention on a woman’s reproductive organs first and foremost – creating a strong pro-natalist, coercive discourse about women’s healthcare, and shifting the focus to future outcomes (pregnancy and children) rather than the immediate patient at the appointment.

This is not to say that the ultimate goal of the One Key Question Initiative, to “ensure that more pregnancies are wanted, planned, and as healthy as possible,” is wrong. In fact, I firmly come down on the side of every child a wanted child, and as authors Julie F. Kay and Michele Stranger Hunter note, “about 85 percent of couples not using contraception will become pregnant in the next year, whether they intend to or not.” Primary care physicians should ask their female patients about childbearing and reproduction; the physician should know the patient preference and note that in her chart. In following visits, it’s more than acceptable to ask a woman who indicated she is not interested in bearing children if her contraceptive choice is working as desired, if there are any side effects, even if the woman wants to make any changes to that contraception. What isn’t okay is to make “would you like to become pregnant in the next year” a mandated question operating from a presumption that pregnancy is always a possibility on the horizon.