By Kim McAuliffe

Content warning: discussion of pregnancy loss

I vaguely remember the first time I was bombarded with Facebook and Google ads for a pair of boots I’d added to a shopping cart but never bought. I was creeped out, uneasy, a bit annoyed. My computer was spying on me, whispering about my habits and preferences to various interested parties behind my back.

Now, it happens so often that I don’t bat an eyelash. I find myself managing how Facebook advertises to me by purposely clicking on comments for ads on things that marginally interest me, not because I want more of those ads, but to minimize exposure to ads I don’t want to see. To make its algorithmic analysis of me smarter. I can’t stop seeing ads, so I try to avoid ones that will hurt or annoy me.

This kind of marketing will never go away. At this point, maybe most of us don’t notice, or don’t care. But there are some subjects, some products, that can be triggering, emotionally challenging, even devastating. There are some topics that should be treated with more care.

I find myself managing how Facebook advertises to me.
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I’ve written about pregnancy loss before. Twice. I mentioned in the first piece that in my positive-test excitement I downloaded multiple pregnancy apps only to find later that one or more had sold my information to Similac, which continued to send me unsolicited email long after the pregnancy itself was gone.

What I haven’t written about until now was how shortly after the second loss I got a physical package in the mail from Similac with formula samples and other crap. It seemed so random — until I realized Similac had obtained from the app not only my email address, but my projected due date from the first pregnancy. I was getting this formula right when I should have had a newborn in my arms. I was so hurt by this unexpected reminder, it sent me back into a morass of dark thoughts I had only just started to escape. I was angry; shouldn’t something like a due date have been considered “personally identifiable information” (PII) or protected medical data? How was that even legal?

Hi @AbbottGlobal after 2 miscarriages it’s v sad 2 get surprise #Similac via info u bought fr preggo app I installed

— @EnameledKoi

You can see in the Twitter thread that the company responded, asking me to DM them.

@EnameledKoi Our sincere apologies Kim. Please send us a direct message with your contact information. Thank you.

— @AbbottGlobal

They agreed to remove me from their mailing list, but showed no inclination to take any action that might prevent future harm to others.

I won’t share them here, but the responses to my original tweet make it clear that I am not the only one to have been harmed by similar marketing. I found out that this is so common, in fact, that loss-support groups warn people about it.

@EnameledKoi Have unfortunately suffered the formula samples in the mail too. Luckily we attended a loss support group and were told it would be coming. When your hurtful actions are so common that decent people warn each other, you have a problem. Thanks for posting this.

— @mescad

I also never wrote about the third pregnancy loss a few months later. It was too much, and there were too many other terrible things happening at the same time.

But imagine this for a second: You are nine weeks along, but instead of a heartbeat, sonograms reveal only an empty gestational sac that doesn’t grow. You hope it was too early, a miscalculation, but that hope bleeds away a bit more with every passing day. You spend an indeterminate amount of time waiting to miscarry. You end up traveling with a “specimen kit” because there’s a family emergency — it could happen in the shared bathroom of someone’s AirBnB, but genetic testing on the “products of conception” might be the only way to figure out what’s been going wrong all of this time.

Meanwhile, you suddenly start seeing ads for baby products, nursing bras, pregnancy workouts, and whatever else you can imagine on Facebook. After the initial emotional kick in the gut, you’re angry, because you weren’t stupid enough this time to install any apps. You can’t figure out what happened, until you realize that every desperate Google search for “slow-rising beta hcg levels” or “possible blighted ovum” in your quest for miracle stories has only told the data gods that you are (sort of, not really) pregnant and now is a good time to market baby-related things at you.

You realize your devastation is immaterial in the bigger picture, that you’re an edge-case scenario, and that the gain for all companies involved is too great to care about the heartbreak they’re causing you, right this minute. As if you didn’t already feel so absolutely alone.

It shouldn’t be this way.

If advertising your product has the potential to cause harm, you have the responsibility to try and mitigate that harm.

How The Medical Community Is Pushing Invasive Procedures On People Who Miscarry
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Asking product manufacturers, marketing departments, and social platforms to think humanely might be a tough sell. How will people buy their products (or ad space) if they aren’t made to feel they are not thin enough, not hot enough, not smart enough, just not enough? Companies are not in the business of making people feel good about themselves.

But hurting those who have experienced tremendous loss already is a breach of human decency so severe, I have a hard time imagining no corporate executive or employee cares. Surely at least some are upset that their products, upon showing up unexpectedly in inboxes, are re-breaking fractured hearts and shattering any tenuous illusion of normalcy.

There is a solution here, and it’s simple: Pregnancy and baby-related companies need to stop using projected due dates for marketing purposes. They must find better and smarter ways to market their products to consumers more likely to have carried to term, like baby registries or Facebook birth announcement posts. They mustn’t presume that everyone browsing a pregnancy forum is there for positive reasons. I can assure you, from three doomed pregnancies’ worth of reading desperate thread after desperate thread at 2 am in bed, unable to sleep — they are not.

At the same time, app developers need to be more sensitive with user data they share for marketing purposes. They must allow pregnancy-app users to remove themselves from all marketing when they experience a loss.

If your app profits from the hopeful journeys of pregnant women who’ve allowed you into their lives, you have a responsibility to care for them when that journey is cut tragically short. Please, avoid causing additional pain when there is already so much.

Please, do better.

Why Are We Used To Violence But Caught Off Guard By The Existence of Hurt?

We’ve gotten used to violence as background hum, yet we are unprepared to recognize and live alongside people who have been hurt.

flickr/Brian. R

W hen ardent defenders of gun rights don’t want to talk about what’s wrong with guns, they talk about what they think is wrong with the people who make the news for using guns the way they’re made to be used. Often there’s a quietly intense litany of curses — “crazy,” “nuts” — meaning the individuals in question do not count among the “normal.” During this part, they always spit the word “sick” as though there is nothing more wretched and strange than being mentally unwell. Being me. Being among what is actually an enormous and ordinary population.

A disdain for those deemed abnormal is animating the conversation. After the massacres in Las Vegas and Parkland, the idea of bringing back asylums has found new support, in thoughtless one-offs but also in serious proposals in trustworthy outlets. A few Parkland survivors, too, suggested targeting the mentally ill for increased surveillance by law enforcement. There is a troubling desire to deal with the disorder that is gun violence by putting people on notice for their diagnoses.

It can be hard to define disorder, both in the clinic and in talking about what we will and will not put up with as a society. It takes nuance to distinguish disorder from wellbeing on a continuum of possibilities and amid the deep inflections of culture and social context. (Are you depressed, or going through a rough patch? Are you fasting because of anorexia or a religious observance? Is an unlivable minimum wage a spur to betterment or a sign of breakdown?)

But carefully defining disorder is core to grappling with the U.S. gun problem — and envisioning a less disordered, more just world. What do we admit into the fold of normal? What do we map to the edges? And what are we seeing all upside down?

For all the people who marched and spoke out for gun control, there may remain as many with a stoic, fatalist understanding that tragedies like gun violence are to be expected. But this understanding coexists with the idea that the various kinds of hurt seen as the causes and effects of gun violence — mental illness as well as the wounds that follow the path of a rifle round — are not a part of ordinary life. We’ve gotten used to violence as background hum, yet we are unprepared to recognize and live alongside people who have been hurt. We’re caught in a chilling dynamic of hurt disseminated and then obscured.

How We Learn To Love ‘Good’ White Men With Guns

It must be said again up front that the link from mental illness to gun violence is far from straightforward. So entwined are our ideas of mental illness and shocking violence that the question of whether a violent individual is mentally ill is often answered by the fact of their behavior. It is true that reports of mental illness are common among those who carry out some of the most devastating mass shootings. But there remain many mass shooters who do not have an established diagnosis; and among perpetrators of smaller-scale violence, who far outnumber mass shooters, rates of mental illness are unusually low. Even severe mental illness is not enough to explain the pronounced patterns of gun violence unique to the U.S., because concomitant disadvantages are part of the picture. Using the single variable of mental health as a net for identifying danger captures far too many people who were never going to violate the social contract.

The wrongful dread of mental illness as this seed of unthinkable acts makes it difficult to conceive of mental illness as an ordinary characteristic, found abundantly among friends and neighbors and maybe even in ourselves. When I was struggling to get a handle on my major depressive disorder, I understood the concept of “needing help” to mean possessing shortcomings terrible enough to require professional intervention. I shrank from crucial medical care because accepting it would have felt like admitting monstrosity. I did not realize how common my illness was. Nor did I realize that monstrous tendencies inhabit every human being, not just the ones we would make outcasts.

The unseen ordinariness of mental illness, and other illness, can explain gaps in care. Sickness is implicitly seen by too many lawmakers as what happens when you have done something wrong, not a quotidian fact of numerous lives regardless of how they have been lived. If serious illness were seen as truly ordinary, it would not be so hard to afford. Nor would disability be so often a sentence of poverty. Workers would have the right to get sick yet stay employed. Swaths of public life would not still be inaccessible to people with disabilities, and the Americans with Disabilities Act would not be at risk of getting fundamentally undercut.

The people who survive gunshot wounds are no exception to this neglect. The tens of thousands who die every year in the U.S. because of guns are staggering enough, but these dead represent only 20% of those who have gone through the trauma of being shot. Many of the survivors deal with chronic pain and posttraumatic stress combined with health-care insecurity, as detailed by sociologist Jooyoung Lee. Many are uninsured or underinsured and struggle to control their pain, and some may become desperate to find relief; one leapt into traffic in order to be admitted to a hospital for pain treatment. “In addition to feeling victimized by their shooters, gunshot victims also felt victimized by a health care system that did not continue to care for them,” Lee writes.

Even more numerous than the dead and wounded are those who care about them. Some time ago, a rare dear friend to me gained access to a gun, and left us. They were 17, I was also 17. I still dream about it. Impossible to trace the immense shape of the loss. But here is a fragment of it: Not long afterward, I sought out a doctor and asked for a new prescription for an antidepressant. I am trying to say a gunshot has a long echo.

Each of these hurts is elided by inaction. Despite a richness of resources we are at least adjacent to, the threshold at which our current leaders begin to pretend to want to address the health and safety of the hurting, including those with mental illness or physical wounds, is a critical mass of tragic headlines and town hall callouts where constituents beg for access to medicine or for protections from weapons that will continue to inflict injury. The rest of the time, the everyday fact of hurt is, it seems, too atypical to acknowledge through meaningful action at high levels.

Dear Congress: I Don’t Need An Effing Gun, I Need Health Care

“Illness is the night-side of life, a more onerous citizenship,” wrote Susan Sontag. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” If only Sontag’s view were more widespread.

Next to the refusal to see illness as ordinary is the reluctance, especially among those whose foremost sympathies lie with a couple lines on a centuries-old document, to see current levels of gun violence as disordered. Gun deaths in the U.S. have been repeatedly excused as the price of our exceptional freedom. These deaths now threaten to outpace those from car crashes. Few of the records of people shooting each other are defensive or can be in any way justified; far more incidents are murders or suicides. The violence is absolutely beyond a passing side effect of patriotic or honorable necessity.

Yet the prevailing understanding has been that this violence is impenetrable and inevitable. This violence is not to be challenged, but accommodated. For all the dismay felt across the ideological spectrum after every tragedy, there remains a current of deference. There is a greater willingness to carve out gun-shaped spaces across the lives of the potentially vulnerable than to, say, reinstate the ban on assault weapons. School shootings are to be met with backpacks that are bulletproof or see-through, behemoth panic rooms wedged beside students’ desks, something something CPR, calls for more empathy not from potential shooters but from potential victims, and buckets of river rocks in every classroom for dispatching threats by stoning. Believing violence to be inevitable also looks like increasing the presence of police in schools, which brings further risks of violence toward and criminalization of students of color and students with disabilities.

These measures are sometimes called hardening the target. They amount to a crouch that braces against onslaughts of our own making as against the uncontrollable weather. It is imaginatively flat.

There is a greater willingness to carve out gun-shaped spaces across the lives of the potentially vulnerable than to, say, reinstate the ban on assault weapons.

All these imaginative shortfalls converge in the worst way. The costs of gun violence, from physical to financial, are immense, yet numerically murky. These wounds not only are seen as inconvenient outliers but also have not been adequately quantified, thanks to the ongoing inability of federal agencies to research gun violence. This lack of clarity on consequences muffles the urgency of acting on the problem.

The rhythm of violence inflicted while its effects are obscured is often wielded by the privileged and powerful. We see this with sexual predators. We see this in the increasing permanence of war and the failure to care for veterans, or to reckon with the damage left behind. We see this as the right of the police to freely execute black people, made normal every time yet another officer responsible is released without charges.

And it’s in privilege and power that we might begin to find an explanation for the seeming inability of a nation to connect the dots from gunshot to wound. Gun laws in the U.S. have long operated in service of white supremacy. The majority of mass shooters are white men, and about half are domestic abusers; and men constitute the vast majority of shooters overall. But the group most vulnerable to gun violence is young, working-class black men.

Many noted the contrast between the widely cheered protests spurred by the well-off white neighborhood of Parkland and the less-popular movement for black lives, rooted in Ferguson. Gun violence as it most often occurs elicits so little material response because the aggressor or the injured can often be subsumed into structures of oppression. If those who remain in that imaginative crouch shifted the landscape of their sympathy, perhaps the violence we have come to know as everyday would seem more strange. The people who have been hurting the most could finally make their way from the periphery to the focus.

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]]> https://theestablishment.co/bargaining-with-my-birth-control-2a2de4e49172/ Thu, 19 Apr 2018 00:54:03 +0000 https://theestablishment.co/?p=2780 Read more]]>

Many doctors are denying birth control to those who won’t take cervical screenings — even though it’s not medically necessary.

Monik Markus/flickr

Every tin foil pocket in my month’s supply of Mylan birth control pills had blossomed open, punctured and empty. I was ready to puncture the face of the pharmacist who wouldn’t refill my birth control prescription, two days since my last pill.

“Sorry, we can’t refill your prescription until your doctor gives authorization. We haven’t been able to get a hold of her,” she said.

“Can’t you just refill it while I settle whatever is going on with my doctor? My insurance covers it, and I’ve been taking this prescription daily for the past 10 months,” I pushed.

Her voice hardened, as if I had asked her to spot me an extra supply of oxycontin.

“No. We can’t just give you any prescription. We can’t do anything until a doctor signs for authorization.”

I’ve always been sensitive to hormonal changes. A pimple emerged on my chin and a burnt sienna stain greeted me on my underwear the next morning, both signs that my body was weaning itself off the birth control hormones and settling into the rhythm of its natural menstrual cycle. I hadn’t had a period in 10 months, and its unexpected arrival wasn’t helping my rage.

The Strange Sad Tale Of The Death Of The Diaphragm

When I finally got through to my doctor’s office the next day, a nurse informed me that the prescription couldn’t be refilled because of how long it had been since my check-up.

I balked. My last doctor’s appointment had been less than a year ago, and no one had contacted me to say I needed to come in or else say goodbye to my birth control.

Apparently, the doctor decided I needed a pelvic exam and pap smear before she, the gatekeeper to my contraceptives, would give her coveted signature. To be fair, I’d long considered the duo of a pap smear and pelvic exam another necessary burden of womanhood, and made peace with the fact that I needed to be an adult and grit my teeth through all the poking and scraping like my mother had before me. It would be a dreaded annual ceremony, cringingly tolerated so I could keep taking my birth control.

But my last pap smear was a year and a half ago and came back completely normal, and as a woman with the same sexual partner for the last six years, I was not a high-risk patient for a sexually-transmitted infection. There was no medical reason that I needed to get this cervical screening before getting my birth control. This barricade, built by doctors between people with vulvas and their contraceptives, isn’t uncommon. Around one-third of doctors always require a pelvic exam before prescribing or refilling oral contraceptives, despite the lack of connection between birth control and pelvic exams.

Around one-third of doctors always require before prescribing or refilling oral contraceptives.

Requiring people with internal reproductive systems to take annual pap smears can actually do more harm than good. In 2015 the Journal of Research in Medical Science published an article that followed 334 women for two years after receiving an abnormal pap smear. The women received biannual pap smears and annual colposcopy and biopsy exams. Twenty-four months after the abnormal pap result, 308 women had a normal pap smear, leading the authors to conclude that abnormal lesions can spontaneously and naturally regress, and annual pap smears are linked to a high rate of false positives.

That false positive comes at a cost to the patient, who must endure more speculum-spreading interventions.

The U.S. Preventive Screening Task Force, along with the American Cancer Society, considered the high false positive rate when they recommended pap smears occur at an interval of three to five years for asymptomatic women aged 21 to 65. As they wrote in the Annals of Medicine in 2012, “Treatment of lesions that would otherwise resolve on their own is harmful because it can lead to procedures with unwanted side effects, including the potential for cervical incompetence and preterm labor.”

The debate surrounding the benefits of the pelvic exam is a more tempestuous discussion. The American College of Obstetrics recommends a pelvic exam once a year for all people with internal reproductive systems 21 and older. In rebuttal, the American College of Physicians argues against a pelvic exam unless a someone has symptoms of a disease or infection, because more frequent intervention can cause more harm to their health than good. And in the neutral corner, the U.S. Preventive Screening Task Force decided to stay out of the debate completely, citing a lack of evidence necessary to form an opinion for or against pelvic exams.

As recently as 2002 and for decades before then, the American Cancer Society recommended that pelvic exams and pap smears occur at an annual rate to effectively catch cancer. But once a deluge of evidence showed that a majority of HPV infections resolve on their own, they changed their official recommendation in 2012 to a pap smear every three to five years and stopped recommending the pelvic exam altogether.

So why do doctors persist in pushing for annual exams? Sometimes the medical community is slow to accept new findings that change a decades-old process. Some have spent the majority of their professional lives administering annual cervical screenings, and are hesitant to change the habit.

Less altruistically, there’s a monetary gain that may entice doctors to ignore the new recommendations. It would be easier on the doctor to just prescribe and refill birth control prescriptions for their patients. But requiring every birth-control-taking person to come into the office and have their feet in the stirrups guarantees an annual check from each one, either out-of-pocket or from the insurance company.

Why Do We Doubt And Police Those Seeking Permanent Contraception?

Even if the intent is not malicious, keeping individuals from their birth control for no other reason than to enforce a screening is inherently coercive, since the two aren’t at all connected.

Withholding birth control harms a person’s reproductive health and stigmatizes the practice of taking oral contraceptives. As Drs. Felicia Stewart, Cynthia Harper, and Charlotte Ellertson explain in a 2001 article published in the Journal of American Medicine, requiring these exams “may reduce access to highly effective contraceptive methods, and may therefore increase women’s overall health risks. These unnecessary requirements also involve ethical considerations and unwittingly reinforce the widely held but incorrect perception that hormonal contraceptive methods are dangerous.”

Suspending a person’s access to their birth control for any reason, beside it being harmful to their health, is backward. The World Health Organization and the American College of Obstetricians and Gynecologists agree that hormonal oral contraception can be prescribed safely without a pelvic exam. Dr. Anita Nelson, professor of obstetrics and gynecology at the David Geffen School of Medicine at UCLA, calls the practice of only provisioning birth control after cervical screenings “a tragic leftover of the past.”

I don’t want to compromise my control over the reproductive hormones that go into my body, no matter how beneficial and ‘for my own good’ the test is.

The point is not to abolish pap smears or tell people to stop getting pelvic exams. In the past 50 years cervical cancer deaths have diminished by 60%, due in large part to the early detection from pap smears. Cervical cancer used to be the number one cancer killer of people assigned female at birth; now it’s 14th.

But whether it’s a screening test for cancer, a swab for sexually transmitted diseases, or my annual dental cleaning, I don’t want to compromise my control over the reproductive hormones that go into my body, no matter how beneficial and “for my own good” the test is.

If you want to complete a pelvic exam every time you sneeze funny, then I encourage you to, and want people with vulvas to have that choice. But tying the screenings to birth control is unethical and scientifically unfounded. It’s the equivalent to requiring a cis man to undergo a urethra swab and prostate exam prior to buying condoms. It also takes away the ability for those with internal reproductive systems to make decisions about their own health and body.

That’s why I canceled my pap and pelvic exam appointment with my doctor. I couldn’t spread my body open for procedures that were being performed at a frequency unsupported by the science and medical authorities, and fundamentally, I couldn’t support a doctor who would use birth control as a coercive measure for any reason. So I left my doctor permanently. I’m not interested in begging, negotiating, or bargaining with my health care provider in order to obtain my birth control.

What You Need To Know About Reproductive Coercion

I was off birth control for a month as I searched for a doctor that would both accept my health insurance and was OK with committing to a cervical screening once every three to five years. Then I found a better alternative. As the issue of “doctors holding birth control hostage” gains more attention, people are finding ways around the in-person doctor visit to obtain prescriptions.

Lemonaid is a virtual doctor visit. It costs $25 out-of-pocket for an online assessment, then a doctor can prescribe your birth control to be mailed directly to you or picked up at your local pharmacy. Lemonaid only operates in 18 states right now, but hopefully more are to come. Similar resources include Nurx, Virtuwell, and Pandia Health.

The pioneer of the pill and Planned Parenthood clinics Margaret Sanger once said, “No woman can call herself free who does not own and control her body. No woman can call herself free until she can choose consciously whether she will or will not be a mother.” As long as birth control is “given,” “prescribed,” and “permitted” to us, that sovereignty over our bodies, free from obstruction and coercion, is still on the horizon.

Two days after I signed up with LemonAid, answered a questionnaire, and messaged with a doctor about my medical history, I received a package in the mail. It was three months of birth control, delivered directly to my mailbox. I’d never been so excited to take my daily pill.

When I opened the package the familiar yellow containers fell out, followed by two Starburst candies, and a thank you note. After my excitement settled, I realized that this is how easy it’s supposed to be. The “control” in birth control should be possessed solely by the individual taking it. Their contraceptives should never be a bargaining chip.

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]]> https://theestablishment.co/what-a-fake-female-orgasm-statistic-says-about-gender-bias-591985f8d68c/ Thu, 12 Apr 2018 21:36:29 +0000 https://theestablishment.co/?p=2678 Read more]]> For years, experts have been peddling a damaging falsehood about the time it takes for cis women to orgasm.

While I was doing research for my book on female sexual empowerment, I kept coming across a statistic online: that cis women take 20 minutes on average to orgasm. It’s in articles with vague citations like “according to statistics,” “some experts say,” and “studies show”; it’s in blog posts and advice columns by sex therapists. Few of these sources say where the data comes from.

I began hunting down this figure’s source after reading Becoming Cliterate: Why Orgasm Equality Matters and How to Get It by University of Florida psychology professor Laurie Mintz, PhD. Mintz writes that women take four minutes to orgasm through masturbation on average, which was indeed found in sex research pioneer Alfred Kinsey’s interviews and published in his 1953 book Sexual Behavior in the Human Female. But with a partner, she wrote, women take 20 minutes, while men took two to 10.

Mintz is adamant that the orgasm gap — the tendency for men to orgasm more than women — is cultural, not biological. (Note: Not all women’s bodies have vulvas, and not all bodies with vulvas belong to women. But as I researched this article, I found no data on trans or intersex bodies. This, of course, is its own problem, and has led me to refer exclusively to cis women throughout the rest of this piece.)

Why, then, I wondered, did she believe it took women longer?

Over email, Mintz said the 20-minute statistic doesn’t reflect a lack of sexual responsiveness, and she suspects it would be shorter with a long-term partner who understands the woman’s body. (If that’s the case, I wondered, why is it presented as a property of women’s bodies, not men’s technique? The orgasm gap doesn’t seem to be a problem with lesbians, after all.) Regarding its source, she explained, “That 20-minute stat has been written about by some of the most respected sex educators and therapists and researchers. You can find it, for example, on page 19 in She Comes First (Ian Kerner) and on page 9 of The Orgasm Answer Guide (Beverly Whipple).”

So, I flipped to page 19 of She Comes First. It reads:

“Irony, bigger and cruel, seems to be embedded into our respective processes of arousal: that a woman, so unique in her sexuality…should so often find this vast potential for blazing ecstasy smoldered — a magnificent conflagration left unlit — all for lack of a match that can hold its flame. It’s not a problem with the match, say many men, but rather that a woman’s fuse is too long. Perhaps, but then this raises the question how long is too long? Studies, like those by Kinsey and Masters and Johnson, have concluded that among women whose partners spent 21 minutes or longer on foreplay, only 7.7 percent failed to reach orgasm consistently. … Few, if any, of the world’s problems can be solved with a mere 20 minutes of attention.”

The data Kerner’s citing are from Kinsey successor Paul H. Gebhard’s analysis of interviews conducted by the Kinsey Institute. Women were asked how much foreplay they engaged in and — here’s the kicker — the “percent of coitus resulting in orgasm.” Coitus, as in, intercourse — which most cis women don’t reliably orgasm from at all. A meta-analysis of 32 studies in Indiana University professor Elisabeth Lloyd, PhD’s The Case of the Female Orgasm found that only one in four cis women consistently orgasms through intercourse. Lloyd wrote that since many of these women could be stimulating their clitorises during intercourse, the number of women who orgasm through penetration alone is likely lower.

Casting further doubt on Kerner’s extrapolations from Gebhard’s data, it’s unclear what happened during those 21 minutes of foreplay. Blow jobs? Kissing? Role-playing? We don’t know. Whatever the case, it’s unlikely all 21 minutes consisted of clitoral stimulation, given that many men don’t even know where the clitoris is. Only 44% of college men in one study could locate it on a diagram. And that was in 2013, over six decades after these data were collected.

Along with claiming that “a woman’s fuse” is “perhaps” too long, Kerner goes on and on about how difficult and laborious women’s orgasms are — not exactly helping his mission of encouraging men to give them. After reading that “the female orgasm is a more complicated affair and often takes much longer to achieve” and that it requires “persistent stimulation, concentration, and relaxation,” many men may feel intimidated. Why put in so much work for something that may not even show up?

Per Mintz’s suggestion, I also checked out page 9 of The Orgasm Answer Guide, which indeed reads, “While some women have an orgasm within 30 seconds of starting self-stimulation, most women experience orgasm after 20 minutes.” When I emailed Whipple to ask where this came from, she replied, “I have not conducted or published any research on the average time for a woman to experience orgasm.” She forwarded my question to the book’s coauthors in case they knew. None of them got back to me.

Determined to figure out why people think the female orgasm takes so long, I then emailed Indiana University professor and Kinsey Institute research fellow Debby Herbenick, PhD, author of a Men’s Health article that states, “Studies show that it takes 15 to 40 minutes for the average woman to reach orgasm.” When asked where that statistic came from, she told me she couldn’t even recall writing the article. “If pressed to put a number to it, I am not sure I could, other than ‘seconds of stimulation to more than an hour of stimulation preceding orgasm,’” she replied.

Two experts — sex therapist Vanessa Marin, MA, MFT and Ball State University professor Justin Lehmiller, PhD — actually cited a source: the research of William Masters and Virginia Johnson, who observed people having sex and masturbating in their lab beginning in the late ‘50s. (Lehmiller tells me he believes clitoral stimulation would take less time than the 10–20 minutes he cited but doesn’t know of any data; Marin admits her figure of 20 minutes is a “rough ballbark” since there’s “not much research” and that it applies primarily “when you’re first learning.”)

Marin linked to an article in the right-wing UK tabloid The Sun, known for reporting stories based on pure rumor. Lehmiller at least cited a book: Masters and Johnson’s 1966 Human Sexual Response. I also found that 10–20-minute statistic attributed to Masters and Johnson in a textbook: Psychology Applied to Modern Life: Adjustment in the 21st Century by psychology professors Wayne Weiten, PhD, Dana S. Dunn, PhD, and Elizabeth Yost Hammer, PhD.

At that point, I didn’t trust anything I read about orgasmic timing, so I ordered Human Sexual Response off Amazon. After the hefty thing arrived in the mail, I spent a Sunday night poring over it. And poring over it. And not finding anything on this topic. Wondering if I was just missing it, I returned to the book’s Amazon page, clicked “look inside,” and typed “minutes” into the search bar. I learned some interesting facts (“frequently, the increment in breast volume is retained for five to 10 minutes after the orgasmic phase”), but again, nothing about how long anyone takes to orgasm. There was something in a forward by Sam Sloan written in 2009 — “it is said to take the woman 7 minutes 30 seconds to reach the level of arousal where she has an orgasm” — but he doesn’t cite anyone, and I can’t find that number anywhere else, let alone in the book. I did the same thing for Masters and Johnson’s Sexual Inadequacy with the same results. Baffled, I asked Lehmiller where in Human Sexual Response he got his information, but he didn’t have time to look. Fair enough.

It was Hammer who finally shed some light on this puzzle. When I asked her where the 10–20-minute figure that Psychology Applied to Modern Life attributes to Masters and Johnson came from, she replied, “The specific statement that appears in the textbook can’t be attributed to Masters and Johnson. The initial misattribution occurred a number of editions ago, was not caught, and was carried over through subsequent editions.” The real source? Kinsey’s Sexual Behavior in the Human Female, she said. Numerous articles are misattributing Kinsey’s data to Masters and Johnson, who, as far as I can tell, didn’t even study orgasmic timing.

So, it appears that the 20-minute statistic is coming from nowhere, from Gebhard’s data on the length of foreplay before intercourse, or from Kinsey’s data on intercourse. In either case, the numbers are based on intercourse — which means we’ve been judging cis women’s orgasmic ability by an activity they don’t even usually orgasm from.

“The reason we think of men as being more orgasmic involves the ubiquity of ‘sex’ being defined as ‘intercourse,’” sexologist Carol Queen, PhD tells me. “Intercourse doesn’t offer sufficient clitoral stimulation for most women to allow for efficient, easy orgasm.”

But other activities do. As Occidental College sociology professor Lisa Wade, PhD points out, one study found that 90% of cis women orgasmed when their last sexual encounter included oral and manual sex, and another found that 92% did when they engaged in oral, self-stimulation, and intercourse. “The idea that women would have different rates of orgasm depending on what kinds of stimulation that they give their bodies seems almost so obvious that it’s stupid to say out loud,” says Wade. “But we have to do that because the assumption is that women’s bodies are bad at having orgasms.”

Of the 20-minute statistic, Wade says, “There’s nothing there. It’s crazy to me because I hear this said all the time.”

The idea that orgasms come (heh) far quicker and easier to men is one of the most ubiquitously believed gender differences, yet it’s been known since the ‘50s that this is only true during intercourse. Given that intercourse tends to favor male orgasms, it’s telling that our male-dominated society has defined it as “sex.”

When we look at masturbation, gender differences almost entirely evaporate. Kinsey found that 45% of cis women took one to three minutes to orgasm through masturbation, 25% took four to five minutes, 19% took six to 10 minutes, and only 12% took over 10. He wrote in Sexual Behavior in the Human Female:

“Many of those who took longer to reach orgasm did so deliberately in order to prolong the pleasure of the activity and not because they were incapable of responding more quickly. These data on the female’s speed in reaching orgasm provide important information on her basic sexual capacities. There is widespread opinion that the female is slower than the male in her sexual responses, but the masturbatory data do not support that opinion. The average male may take something between two and three minutes to reach orgasm unless he deliberately prolongs his activity, and a calculation of the median time required would probably show that he responds not more than some seconds faster than the average female. It is true that the average female responds more slowly than the average male in coitus, but this seems to be due to the ineffectiveness of the usual coital techniques.”

Sex researcher Shere Hite similarly found that 95% of cis women who masturbated “could orgasm easily and regularly, whenever they wanted.” She didn’t determine the average time, but she wrote in 1976’s The Hite Report that Kinsey’s findings were “similar to the women in this study.” She elaborated, “It is, obviously, only during inadequate or secondary, insufficient stimulation like intercourse that we take ‘longer’ and need prolonged ‘foreplay.’ But this misconception has led to a kind of mystique about female orgasm.”

Even today, the authors of widely used textbooks endorse this view. “During masturbation, 70 percent of females reach orgasm in four minutes or less,” psychologists Dennis Coon, PhD and ‎John O. Mitterer, PhD write in Psychology: Gateways to Mind and Behavior. “This casts serious doubt on the idea that women respond more slowly. Slower female response during intercourse probably occurs because stimulation to the clitoris is less direct. It might be said that men simply provide too little stimulation for more rapid female response, not that women are in any way inferior.”

There hasn’t been much research on this topic since Kinsey, but I’d venture to bet that women might be even quicker if the data were collected today, given that 53% of American women in one 2009 study had used vibrators, compared to less than 1% in the ‘70s, according to Shere Hite’s research. A 2015 study of 100 users of the Womanizer vibrator found that half orgasmed in a minute or less using the toy. Toys aren’t necessary to make women as sexually responsive as men, as some companies would have you believe. They put us ahead of them.

I’m not saying that orgasm should be the goal of sex or that those who can’t orgasm are in any way inferior or unworthy (stigmatization of those who are anorgasmic is a serious issue). Nor am I saying that those who need more time have inferior sex lives. They may actually enjoy sex more, since they get more pleasure before they crash. They should ask for however much time they need unapologetically. And lastly, I’m not saying women’s partners should give up after four minutes. Everyone’s different, and it can take a while to get to know a partner’s body, regardless of gender.

But here’s why the 20-minute statistic pisses me off so much. As Wade puts it, deeming female orgasms more difficult “naturalizes the orgasm gap.” She explains:

“It makes it seem like the orgasm gap is inevitable and acceptable and just, and it makes women feel guilty for wanting to have orgasms and asking for orgasms from their partners because if their bodies are so bad at it and it’s just a burden, women don’t want to be a burden on their partners. And it also gives men an excuse to not try.”

She’s right: Fake statistics about orgasmic timing do get used to naturalize the orgasm gap. The website for Promescent, an anesthetic penis spray that claims to close the orgasm gap by prolonging erections, claims:

“Today, far too many people believe that when they have good sex, men and women are supposed to orgasm around the same time. But, like many other common misconceptions, the science just doesn’t back it up. On average, men take about five minutes to orgasm, while women take much longer, which means that men climax a lot more often than women do. This difference between the male and female orgasm is what we call the Orgasm Gap. Believe it or not, science is to blame. Because men and women are scientifically different. But the best way to beat science is with better science. And that’s where Promescent comes in.”

On Twitter, insecure dudes talk about how it’s not worth the effort to get women off, while women themselves often complain about men making these damaging assumptions.

There’s also another, deeper reason this stat pisses me off. Supposed gender differences in orgasmic timing are often considered God’s cruel joke on humanity, with women the butts of the joke — the unlucky ones. Female multiple orgasms have been deemed the great equalizer in this equation, but in reality, most cis women have refractory periods like men. “I am suspicious that ‘multiple’ is not really multiple in the way Cosmo has traditionally written about them,” sex researcher Nicole Prause, PhD tells me. “Rather, it seems likely that some women have a relatively short refractory period, just like some men.”

Or, we’re supposed to feel comforted by the “fact” that the clitoris has twice as many nerve endings as the penis, another baseless statistic that’s somehow made its way around the internet without any study ever cited. The clitoris and penis develop from the same structure in the womb, so they likely have around the same amount of nerve endings, says Queen. These supposed advantages are typically cited in praises of women, yet they’re often framed as consolations for not having the supposedly superior male body.

This is part of a larger narrative that says that being a woman is a disadvantage, a curse. It dates back to God punishing Eve through the pain of childbirth. He supposedly made the “female body” an unpleasant place to live in, and the idea that we have less access to sexual pleasure perpetuates that notion. From normalizing painful sex and painful periods to lamenting the “elusive female orgasm,” we learn that men’s bodies work for them while ours work against us. We learn that they’re built for pleasure while we’re built for pain. And when we learn we’re built for less pleasure and more pain, we come to accept lives where we experience less pleasure and more pain. Being taught you were born unequal on a physical level instills a deep-seated inferiority complex.

Spreading a false statistic about women as a group reflects and perpetuates the idea that women are poorly built — and that intercourse is the most valid type of “sex.” It also reflects and perpetuates the notion that female masturbation is threatening — hence the constant omission of that four-minute figure.

Consider this parallel: The clitoris is frequently omitted from medical textbooks. Scottie Hale Buehler, CPM, MA, a PhD Candidate in UCLA’s Department of History who studies this very phenomenon, tells me: “The clitoris embodies many misogynistic fears about sexual pleasure: that penetration and penises may not even be necessary for orgasm.” When asked whether the erasure of female masturbation statistics could reflect the same fears, Buehler told me, “I think your hypothesis sounds convincing,” adding that heteronormativity also likely plays a role.

So, perhaps it’s threatening for men to know that women’s own hands are far better at getting them off than a penis. As psychologist Manfred F. DeMartino wrote in the 1974 book Sex and the Intelligent Women:

“As more women become liberated sexually and thus more confident, aggressive, and demanding in their heterosexual relationships, and because of their ability to reach several orgasms in a short time interval, men may well experience a greater sense of threat with respect to their feelings of virility and masculinity — they may find it increasingly difficult to sexually satisfy women. Past and current research clearly indicate that the majority of women in our society are able to attain an orgasm much easier and faster from clitoral self-manipulation than from sexual intercourse.”

That said, I don’t believe that those who cite the 20-minute statistic are driven by misogyny or fear of the clit. They’re just trying to convince women’s partners to spend some goddamn time on them for once. They want to close the orgasm gap. We share that mission.

But achieving orgasm equality is not empowering if it’s framed as a way of overcoming cis women’s shitty biology. In that case, it’s only feeding the idea that women are inherently defective. Claiming that women need toys or vaginal treatments or extra time to gain equality implies that they’re innately unequal. True orgasm equality means abolishing this hierarchical thinking altogether.

Think about it: We’ve relegated the activities that give most women orgasms to “foreplay,” mere preparation for the main event that produces male orgasms. We need to adjust our definition of “sex” to accommodate women’s bodies, not judge women’s bodies based on a patriarchal definition of “sex.”

All we really need is more respect for the vulva and more accurate information about how it really works. Because, trust us: Contrary to popular belief, it works just fine.

Getting pregnant wasn’t a race against time, it was a race against mind.

Kewei Hu / Unsplash

Content warning: discussion of suicidal ideation

Throughout my teens I was adamant I didn’t want children. I thought they were annoying, sticky money pits who had no business being near me. I was a sad and corny teen. Now, I’m 30. I’m still sad, but I’m not broke, and I have a husband. My feelings on the child situation have changed. I’m more open to it now. I think it was a combination of seeing other people with kids and, as I’ve gotten older, having more love to give — or something. I didn’t have the most stable childhood (or adulthood, for that matter), but I’m now in a position where I could give a kid a good and not-at-all toxic upbringing. I’m not desperate to have a baby — not that there’s anything wrong with that — but I’d love to try.

I traipsed off to therapy, excited to discuss starting a family. I’d only talked about it with my husband, and my therapist would be the only other person who’d know. Lucky her! I readied myself for all her joy and delight. I’d seen it before with my friends. They’d start with a goofy grin on their face and say something like, “We’ve stopped using birth control.” This would be followed by gasps and tiny squeals of glee: “You’re trying for a baby! We’re so happy for you!”

The Maternal Instinct Is A Myth And We’ve Got The Science To Prove It

With the same goofy grin that I’d seen from my friends, I proudly announced to my therapist that I wanted to start a family. She smiled, looked me dead in the eye, and said, “If you want to have a baby, you need to tell me around three months before you start trying.”

Ah, just how I dreamed it would be!

I have bipolar II, which means I experience frequent episodes of severe depression with a smattering of hypomania. Therefore, I need a longer lead-time to process and plan for the mental and physical changes that occur during pregnancy. I’d heard of postpartum depression, and I’d heard of people developing depression during pregnancy, but I haven’t heard anything about what happens when you’re already depressed and want to have a baby. But with that one decision — to try for a baby — my depression shifted to pre-prenatal depression.

The prevalence of mental illness cannot be overstated. One in six Americans suffer from a mental illness, millions of whom are depressed — and according to an analysis carried out by a clinical psychologist at Oxford University, women are 40% more likely than men to develop mental health conditions.

With the one decision to try for a baby, my depression shifted to pre-prenatal depression.

So it seemed odd that there’s not more out there about getting pregnant while depressed. The few stories I found scared the shit out of me. (One article was ominously titled, “Scary News For People Who Get Pregnant While Depressed.”) And, unfortunately, there’s no clear list of guidelines for depressed women who want to become moms.

As Bay Area psychiatrist Jill Armbrust explained to me, the plans for treating a person with depression who wants to get pregnant are the same as those for anyone who’s becoming depressed. “The difference being there would be more focus on and care put on the side effects of various medications.” This takes a lot of time and careful planning. “One usually starts with about six months of psychotherapy if you have that kind of luxury,” Armbrust advised.

The guidelines that do exist center on medication, of which I take a range to keep my mind intact, namely lithium, Latuda, trazodone, lorazepam, and clonazepam. I’d be a whole lot worse without them, and — with absolutely the intention of sounding dramatic — I may even be dead.

But it turns out these pills don’t mix well with pregnancy. My therapist advised weaning off the meds completely. My first thought was simply, “No.” I didn’t want to think about who I would be without medication. I tried to kill myself without medication. My brain flooded with questions: How could I create a new life when I’ve wanted to end my own? Will I turn into a monster? Should people like me even have children?

I found myself asking that last question a lot. Given my history of depression and suicide, was it safe or even fair for me to have kids? I wondered if there were any circumstances where therapists advised people against getting pregnant.

There are, though, as Armbrust explained, “It’s tremendously variable because of the stigma that even some practitioners carry.” While there’s no absolute answer to this, Armbrust suggests the only two reasons she’d advise against pregnancy: when the woman had unstable psychosis or an untreated substance abuse problem. She went on to say that she believes women with schizophrenia, bipolar, and depression — like me — are all candidates to be very good mothers.

I am fortunate enough to have a therapist, and (thanks to my husband) health insurance. Having a baby while depressed was going to be hard but not impossible.

So we began.

Confusion

My therapist said we would start by lowering the doses of my lithium, trazodone, and Latuda. However, I had to stop taking lorazepam or clonazepam, since both have been recognized by the U.S. Food and Drug Administration as drugs with “positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans.” The U.S. agency calls these Category D drugs, with Category A being the safest for pregnant women and X being a total no-go. But since I didn’t take lorazepam or clonazepam every day, I didn’t think that would be too bad.

The one I was worried about most was lithium. Lithium was the one that tied the room together. At the time of talking to my therapist, lithium was category C, the third of the five categories, so I could potentially keep taking it at low doses even if I did become pregnant.

My therapist assured me we’d get through it together and that she’d be monitoring me closely. She suggested I see an OBGYN and see what they thought. About a month later I was booked to see a nurse practitioner where I had a pap smear and a ton of questions. It isn’t common practice for an OBGYN to screen for depression at this stage, though Armbrust says this would be hugely beneficial, given that postpartum depression is so common. But when it comes to pre-prenatal depression, “It’s still considered stigmatized in a separate area of expertise.” Most of the time you have to volunteer the information yourself.

Given my history of depression and suicide, was it safe or even fair for me to have kids?

I told the nurse about my psychiatric history, and that I was trying for a baby. Before I could ask her any questions, she stopped me: “Do not start trying until you are completely off your medication.”

“Even lithium?” I spluttered. She furrowed her brow, left the room to check. Three minutes later she came back. “Even lithium.”

My therapist was confused. “Even lithium?” she asked me. I nodded, and when she opened her laptop to check, she nodded, too. “It’s changed to a category D” — just like lorazepam or clonazepam.

This was the first of many conflicting pieces of information I would come across in my mentally ill quest to become pregnant. Distressed that no one had a clear-cut answer, I turned to the one place I knew would be even worse, though it seemed to be also the place where my doctors were getting their information: the internet.

LUV 2 B ONLINE

Here in the murky depths of online pregnancy forums is where I found other people with mental illnesses who were as equally as confused as me. Though there were still no clear answers, it was strangely comforting. Up until now, I’d been speaking to medical professionals who discussed coming off medication as though it were a procedure. However, in the forums I found people who were talking about it in terms to which I could relate. These were people who lived with schizophrenia, bipolar, PTSD, and depression. There were those who felt guilty about continuing to take medication and those who were OK with it. There were some who’d stopped taking their medication, had a bad episode, and had to go back on. And there were those who stayed off meds for their whole pregnancy but went back on after the baby was born. One thing was for sure, nobody had the “right” answer because the “right” answer is whatever works for you.

These conversations turned from medication to general feelings. Women talked about how they felt ashamed of feeling depressed when they should be happy and grateful that they managed to get pregnant in the first place. They talked about how they wrestled with their emotions on the inside and the judgment cast upon them from the outside. The judgment on the outside being other moms in the forum telling them they’re bad mothers for taking medication. It happens all the time and is not exclusive to pregnant mothers with a mental illness. If you’ve ever been on a parenting or pregnancy forum, you’ll know that, while they can offer solace and support, they’re also diabolical whirlpools of toxicity designed to drag you down into a complex sewer system of self-righteousness and unconstructive criticism.

Fear-Mongering Among New Mothers Is A Profitable Business

“So why even go on them?!” I hear you cry. Great question — but avoiding them is easier said than done, especially when forums are one of the only places I could go to read about other pregnant peoples’ struggle with mental illness (and I’m a sucker for shame). Even though pregnancy forums are bustling hellscapes, they’re (ironically) the only places some us can go to discuss “taboo” subjects such as mental illness.

It’s Not You, It’s Me

I decided the “right” answer for me was to come off all my medication before trying for a baby, including the lower-risk ones. After three months of careful planning and monitoring, I was entirely med-free for the first time in five years, when I’d tried to commit suicide. The few other times since then when I came off certain medications because I convinced myself I didn’t need to be on them, I experienced particularly bad depressive and hypomanic episodes, at one point landing myself back in the hospital.

Before, I didn’t tell anyone when I went off medication and decided to go cold turkey, which isn’t ideal. This time, it felt different. I had my therapist monitoring me closely. Still, being off meds contained all the terror of a manic episode without the mania, like walking a tightrope over the Grand Canyon with no safety net.

For the first time in five years, I started to feel — but not in a good way. I’d become so accustomed to my moods being regulated; it was like I had two bouncers standing in front of my mind, letting thoughts and feelings come in at a steady pace. Now the bouncers were gone, and everyone started to rush into the club and fuck shit up. I was overwhelmed and began to isolate myself. I talked to my husband, my therapist, a couple of friends, and a whole bunch of strangers on the internet. I retreated into the pregnancy forums where I could be among women who were going through the same thing as me. Out of everyone, the forums is where I felt the most comfortable. I didn’t feel like I was burdening people with my “issues,” I didn’t feel like I was boring anyone with my constant questions, but most importantly, I didn’t feel alone. I’d tried talking to other people, but with all these unsupervised feelings, it was hard not to get upset or angry.

On The Fear Of Pregnancy Loss During The First Trimester

When it comes to your pregnancy, everyone you meet is an expert on you and your body. You tell people you’re trying, and immediately they’re all, “You’ve got plenty of time,” or “Relax, it can take up to a year.” As with everything in life, if I want your opinion, I’ll ask for it, but please know I’ll never ask because I never want it. I knew getting pregnant could take a while. Sometimes it happens instantly, other times it can take years. Either way, the wait can be excruciating. And when you’re flying solo without your antipsychotic medication, the wait becomes dangerous.

Every day I’d wake up and wonder if today were the day I’d lose it. I hoped I wouldn’t have to be hospitalized again. I begged my mind not to have an episode. For me, getting pregnant wasn’t a race against time, it was a race against mind.

After only a couple of months, I felt unstable. I started to feel sad. Not depressed, just sad. I assumed this was part of my unregulated moods, but the sadness lingered. Before long, I felt myself sliding into dangerous territory. The sorrow had morphed into depression, and without any medication to block it, the depression began to pick up speed. I still wanted to have a baby, I just didn’t know if I would be around to have it. I talked with my therapist, and we decided to give it one more month before I went back on the meds. One more month would make it three months total of being off meds, and whether I became pregnant or not, I felt proud I’d made it this far. Those three months were both terrifying and challenging, but nothing prepared me for what happened next. I got pregnant.

Uncomfortably Numb

Even without a mental illness, pregnancy can mess with your head. There’s the hormones, nausea, and the ever-changing body, which can be hard to process for anyone. But here I was, with no control over my body or mind. Everything started happening so quickly. I felt as though I was losing myself. I was happy and grateful we’d managed to get pregnant in a relatively short amount of time, but I was also depressed and disconnected. I remember staring blankly at the eight-week ultrasound. I knew I should be feeling something, but it just wasn’t happening. It was like I was experiencing phantom feelings. I’d already disassociated from the pregnancy, a pregnancy I wanted and planned. I started to experience a familiar numbness, the same numbness that enveloped me for the first 20 years of my life. I couldn’t even feel shame anymore.

Just like pregnancy, everybody experiences mental illness differently. And while I am fortunate enough to have a therapist, health insurance, and an OBGYN, the only person who was going to come up with the “right” answer was me. I’m now four months along and still off medication. Things aren’t perfect. (Is any pregnancy?) I still struggle with depression, and managing without meds does not mean I’m “cured.” I will always have bipolar, and anxiety, and PTSD, but there are things I can do to lessen the mental strain while I’m pregnant.

Just like pregnancy, everybody experiences mental illness differently.

I continue to work hard at therapy. I try to eat healthily and exercise as much as I can. And I’m starting to increase my social support system beyond the confines of the internet, which has been daunting, but it’s helping a lot. And although I feel good now, I don’t take for granted that it could all change.

I want to be clear: Nothing can or will replace my medication. Even now, going back on medication is still an option, and once the baby is born, the plan is to start taking them again. The most important thing is my health. If I’m not healthy, then there was no way this baby could be either. I considered starting back on a low dosage of lithium, but I before I made that decision, I wanted to work on my mental health one last time. Again, I do not judge anyone who continues or goes back to their medication. If that’s what’s best for them, then that’s the right decision.

These are just things that help me personally, but who knows, it all may change. I’m taking it one day at a time. That’s the way it is with depression. There’s no cure; there’s just what works for you, for now.

Looking For A Comments Section? We Don’t Have One.

]]> https://theestablishment.co/building-a-better-breast-pump-should-be-everyones-hackathon-challenge-ffe019b4f124/ Wed, 04 Apr 2018 21:44:03 +0000 https://theestablishment.co/?p=2522 Read more]]> By Marya Errin Jones

When engineering teams aren’t diverse, only certain people’s problems get solved.

On April 27–29, MIT Media Lab will host its second Make the Breast Pump Not Suck Hackathon. The aim of the hackathon, the first iteration of which took place in 2014, is to bring technological equity to the table, to develop improved lactation devices, to fight the stigma of breastfeeding, and to brainstorm services that better support women who want to breastfeed their babies in a society that often shuns the practice. Centered on collaboration over competition, the hackathon brings together top CEOs of women’s health companies, teams of doulas, mothers of color, and LGBTQ parents and families to help generate better solutions for the breast pump.

Even for people who are not mothers, the hackathon highlights the need for collaborative innovation that reflects a wider community, making room for equity by design. But, breast pump? For many, that’s still a hard pill to gulp down, at least at first.

I’ll admit that I don’t think much about breastfeeding and I think of breast pumps even less. I’m a 48-year-old, unmarried, unpartnered woman. It’s more likely that I’d be struck by a bolt of lightning inside my own apartment than become anyone’s biological mother. And basically, a hackathon is like spring break for nerdy white dudes, so why should I care about what they’re doing? I have no tender mound of nipped flesh in this game. I’ve no breast in this pump.

The thought of breastfeeding conjures mythological images for me, like the 13th-century sculpture La Luna Capitolina, the Capitoline Wolf, nursing the frozen forms of Romulus and Remus. The lean she-wolf grimaces as the greedy twins, mouths and hands open, wait for her milk to rain down. My mind skips ahead 400 years to 1977, when Buffy Saint Marie breastfed her then baby, Dakota “Cody” Starblanket Wolfchild, on Sesame Street, while Big Bird observed.

In a recent television ad, Wisconsin gubernatorial candidate Kelda Roys not only challenges Scott Walker’s reign, but takes on the stigma associated with breastfeeding by nourishing her baby while delivering her campaign message. This seems like a revelation, so infrequently do we see breastfeeding in our culture.

Until last week, I didn’t know my own mother breastfed me. She never told me, and I never asked. I never even thought about it. This revelation just slipped out during a conversation between commercial breaks while watching Scandal. I thought about my bond with my mom, how strong it is, and how important it must have been to her back then, as a politically active, working mother and wife in 1970, to create space to breastfeed me in a time when women were also boldly expanding the territories of feminism and the meaning of womanhood.

The Troubling Erasure Of Trans Parents Who Breastfeed

Today, we treat breastfeeding as a solely natural occurrence. I mean, you don’t ask grass how it grows, right? We expect all mothers to be capable of breastfeeding, and to disappear from public life to breastfeed behind closed doors, or in dirty toilet stalls. Insurance companies give free, but subpar, breast pumps to poor and working poor mothers. But when those break, they suggest mothers have failed to adequately use said breast pump, which seems to have as many moving parts as a pocket watch, and then pressure them into feeding their baby factory-made formula when that’s not their preference, often as a result of their “failure” to express their milk using the pump. (It’s important to note too, of course, that women should have the freedom to decide the best way to feed their children, be it breast or formula or some combination of the two.)

We gaslight mothers by saying things like, “breast is best,” while ignoring the need for an equitable infrastructure, like paid family leave, so they actually have time to bond with their children. We tell women we value them most when they become mothers because, “[we] believe that children are our future,” and then we rob them of the time to actually parent their kids. How is this all supposed work?

Catherine D’Ignazio, an Assistant Professor of Civic Media and Data Visualization Storytelling in the Journalism Department at Emerson College, and co-founder of the Make The Breast Pump Not Suck Hackathon, was a graduate student with a newborn pondering the answer to this question while dealing with the complications of feeding her third child and getting to class. Using a breast pump became an essential part of her life and routine when she faced a medical crisis. This need for a breast pump also revealed many of the problems women face in the pursuit of using the machine.

We gaslight mothers by saying things like, ‘breast is best,’ while ignoring the need for an equitable infrastructure.

“A couple months in, I couldn’t breastfeed for 48 hours,” D’Ignazio tells me in a phone interview. “It was a little insane I couldn’t find any help. I was a privileged person, I could pay out of pocket, and I literally couldn’t find anyone to help me. It was fine, he didn’t die, but the experience was traumatic.” D’Ignazio explains that while she possessed the affluence to obtain high-quality health care, key elements of postpartum support, like an efficient breast pump, and the infrastructure of time and space to use it was lacking.

Her third time pumping, D’Ignazio says she had a revelation:

“Shit, I’m sitting on this bathroom floor pumping, at MIT, in this super fancy building in the most elite engineering school in the world. Why am I sitting on the fucking floor?”

Her frustrations led D’Ignazio to reach out to her colleague, Alexis Hope, a designer and research affiliate at the MIT Media Lab and Center for Civic Media, to tackle the problem head on. “That was the starting point of the whole thing,” D’Ignazio says. “We were in a position of power — we could do something about this!”

In 2014, the MIT Media Lab hosted its first hackathon to improve the breastfeeding and breast pumping experience. That’s not to say making the hackathon happen was an easy sell. “[The Make the Breast Pump Not Suck Hackathon] was perceived as weird by students, faculty, and administrators at first,” D’Ignazio says. “Like, why are you doing this?” But soon, more people got on board. “One particular group was so moved by the talks and energy of the event that they dropped out of volunteering and formed their own team. They developed this warm pump cover to make the pumping experience more warm and fuzzy.” She recalled some team members said, “I see why this matters.”

Your Attitudes About Parenting Might Be Classist

While 2014’s Hackathon was a fun event that brought together 150 engineers, designers, health-care providers, parents, and so many babies that the event set a Guinness Book of World for the most babies at a hackathon, it was a predominantly white experience that seemed to be designed for a privileged few. Ultimately, the hackathon rendered solutions for the breast pump that mostly only wealthy people could afford, like a $1,000 breast pump — not exactly what D’Ignazio had in mind.

“[Innovators] made a lot of assumptions about people’s job situations — that they had a private office to pump in, access to outlets,” D’Ignazio says. Innovators assumed that they’d provided solutions to serve the needs of all women. But innovation requires equity; otherwise you end up with technology like soap-dispensing sensors that only trigger soap when a white person uses them. Real change comes when the most marginalized in society are able to harness the power of equity to move forward.

That’s why even I, a childless human, am on board. It’s time to create a world that works for everyone, not just the privileged few. The breast pump is as good a place as any to push for inclusion in design, and that can’t happen without equity on all fronts.

Real change comes when the most marginalized in society are able to harness the power of equity to move forward.

Kimberly Sear Allers, author of The Big Let Down: How Medicine, Big Business and Feminism Undermine Breastfeeding, and the Media and Communications Strategist for the team, has been instrumental in the shift of perspective on the hackathon. According to D’Ignazio:

“[Allers’] book was a galvanizing force to think about how we address these things in a more systemic way while maintaining the playfulness and let’s-do-it spirit of the first hackathon, at the same time recalibrating who’s innovating and who’s at the table.”

D’Ignazio says Allers’ research provides a pathway to understanding the power of shifting the narrative of breastfeeding from corporations and insurance companies — with their shitty products and policies that profit from our collective silence — to sharing personal stories that support the expansion of breastfeeding knowledge between mothers, their children, and their families. And by giving nursing mothers a place to share their stories, engineers can hopefully better understand what they really need.

Allers explained that “it’s not okay to have a group of white male engineers designing something that needs to also help low-income white women, and when there are many black and brown engineers who should be at the table as well.” Black and brown voices will also be amplified in the hackathon’s participants and teams.

Bad Advice On Foster Daughters And New Mom Nudity

The Make the Breast Pump Not Suck now hosts four organization communities through its Community Innovation Program Breastfeeding Innovation Fellows. The Boston Team, under the leadership of Nashira Baril, is working on the creation of a free-standing birth clinic to be based in Dorchester, Massachusetts. Harambee Care of Detroit, led by Executive Director Anjanette Davenport Hatter, is developing tools for self-advocacy and to increase the availability of lactation support based on the individual needs of mothers and infant care. Rachael Lorenzo, Founder of Indigenous Women Rising, is working with Pueblo and Apache seamstresses to develop breastfeeding-friendly regalia that will allow mothers to breastfeed while maintaining their sacred practices. And the Tupelo team, spearheaded by Toni Hill of Northeast Mississippi Birthing Project, focuses on breastfeeding equity and culturally appropriate care.

Along with the diverse voices of the teams participating, hackathon organizers will present the findings of their story collection project from the previous hackathon. Many expressed their displeasure with the time it takes to clean the pump, the god-awful sound it makes when in use, the need for more discrete ways to pump when in public, and the pain of having one’s nipple suddenly sucked into a plastic, conical-shaped cup. The story collection also yielded compelling arguments for not only better breast pumps, but improved postpartum services for mothers and families.

“The reason we are doing this again is the immense story collection and analysis process that happened after the last one,” Becky Michelson, Project Manager at the Engagement Lab at Emerson College and the Program Manager of Make the Breast Pump Not Suck Hackathon, says. “During the last Hackathon there was an email open to the public that said ‘share your experiences and we’ll share them with engineers, technologists, and researchers.’ People thought a few dozen would come in. More than 1,100 stories came. Some of the findings were…there was a lot of internalized shame, guilt, anxiety , and depression, because people felt they are failing.”

The Tech Bias: Why Silicon Valley Needs Social Theory

According to Michelson, the stories revealed that a better breast pump is a societal issue. Our culture, while pressuring new mothers to breastfeed, is not set up to help women and new parents succeed at breastfeeding and pumping when they need support. “We need to take on a more system-level approach to change and to galvanize creativity, innovation, and advocacy for breastfeeding and pumping support,” says Michelson, “so it’s not just about the pump this time around; it’s about the ecosystem, technology, and program services for the postpartum experience.”

Adds D’Ignazio:

“The stories were about way more than a breast pump. They were stories about going back to work, the stigma of breastfeeding, the places where people were pumping. There were stories of women feeling like failures. That’s what galvanized us to think about how to address this in a more systematic way. We needed to turn that negative energy on the system that was failing us.”

The us means ALL of us — even no-baby-having people like me, because in order to create real change we have to center the most marginalized to see that change.

Included in the latest iteration of the hackathon is the work of Kate Krontiris, Principal Investigator on the Hackathon’s Leadership team.“The design [of the breast pump] itself is an issue of equity,” Krontiris says. “We don’t value parents’ time. If your baby requires triple feeding [to up a mother’s milk supply], if your baby had to eat every three hours — two out of three hours are spent feeding and cleaning the pump, and that’s one hour of sleep every three hours. Designing a pump to be a much better and more efficient process actually has real implications.”

While the need is obvious to hack the breast pump, Kimberly Sears Allers cautions us all to question our reliance on machines, even breast pumps. Allers suggests that we balance innovation, policy, and equity if we really intend on fruitful results of this hackathon.

“I feel very strongly that breast pumps are a necessary evil,” Allers says. “Women actually deserve time to mother. We can’t let the pump enthusiasm distract us from the fact that it is a crime that women are going back to work two weeks after giving birth and that we have to rely on a machine to finish the job that we’re not allowed to do ourselves. We have to not become a Pump Nation and turn the pump into the all mighty thing to save us, when what we really deserve is time to mother, time to breastfeed and be with our kid.”

Even so, Allers says that breast pumps should at least work efficiently if we must use them, and that tied to efficiency, this is the true value of using the machine — the value of a parent’s time.

The breast pump is a tool, and one whose use affects all of us, breastfeeders or not. Let’s make better ones that work for everyone.

Although cancer patients already have enough on our plate, we are tasked with the labor of managing other people’s emotions about our disease.

flickr/christina rutz

On the pilot of the CW’s new feel-good dramedy, Life Sentence, a young woman with terminal cancer, Stella (the lithe, doe-eyed Lucy Hale) picks out a cake for her own funeral. Later in the episode, the cake is repurposed for a celebration, because Stella finds out that her cancer has been miraculously cured. Instead of a projected six months left to live, she now will now enjoy a normal lifespan. In typical Hollywood fashion, a reevaluation of her priorities and relationships ensues.

Let me tell you about someone who did not luck out like Stella did.

Candace* a mother in her mid-thirties, was diagnosed with aggressive breast cancer when she was young, like me. Along with her friends and family, she created a Facebook page, “Candace Crushes Cancer,” to update others on her medical journey, as soon as she realized how serious her case was. It happened quickly. Metastatic lesions invaded her hipbone, then ate away at her liver, and finally appeared in multiple spots in her brain. Terminal. She tried medication after medication — harsh chemotherapy regimens that sapped her energy — and attempted to enroll in clinical trials for experimental drugs. She rapidly ran out of options as her blood counts tanked. Candace posted that she wasn’t ready to die. She wanted to fight. It was October, but her doctors cautioned that she probably wouldn’t see Christmas. I don’t need to tell you what happened next, but, to put it crudely: Cancer Crushed Candace. In the final photos from just before she entered hospice care, she was bald, weakened, unrecognizable. She left behind a partner and four young children.

To The ‘Cosmopolitan’ Editors Who Offered Cancer As Diet Advice

This is unfortunately the real outcome of almost all terminal cancer cases, in 2018. Early stage patients have a very good shot at curative interventions, remission, and long life spans, but for many of us — those with cancer that hides out for years before making itself known, or is repeatedly misdiagnosed, or mutates into a treatment-resistant subtype, or simply spreads very quickly — it’s too late for a miracle. By definition, the cancer will win, and not the long-suffering patient, unless they get hit by a bus first.

Fantasies that tell us otherwise are dangerous and insulting, and they don’t only come from Hollywood. The idea of the “miracle cure” represents a conglomeration of media mythmaking, mainstream religious tropes, New Age spirituality, pseudoscientific quackery, and good old-fashioned commercialism. It’s based on the imperatives of hope and optimism that pervade our conversations about illness and disability, to the detriment of patients who grow weary from having to perform a “positive attitude” about experiences that resemble physical torture.

It’s a grave offense to be fatalistic in the face of cancer.

It’s a grave offense to be fatalistic in the face of cancer. When you get sick, the trite messages found on embroidered pillows, pastel Instagram graphics, and t-shirt slogans become directives for how to approach your illness the right way. You are somehow supposed to “expect miracles,” while watching fellow patients waste away, drop dead, and orphan their children. You notice that sympathy is reserved for the most upbeat survivors, and that fear, anger, and especially candid resignation make other people deeply uncomfortable. Although patients already have enough on our plate, we are also tasked with the labor of managing other people’s emotions about our own disease. I discovered early on that presenting as cheerful and hopeful yielded more support from strangers, acquaintances, and caregivers, while being honest about my fears left others unsure of how to react, or eager to dismiss my feelings as too “morbid.”

My friends and family, understandably, don’t want to think about my death. But I do. In fact, it’s the only real way that I’m able to process what has happened to me, and what is likely to happen in the future. I have to confront it, to stare it in the face. The problem is, because of social taboos, I am left to do this daunting work on my own, tossing and turning in the dark each night imagining the assortment of painful ways my body will one day shut down. It’s a very lonely reckoning. The silencing of “negativity” is a recipe for patient isolation.

The Cherry Blossoms Tattoo Where My Breast Cancer Scar Was

The reality is, my cancer doesn’t care how I feel about it, and while a positive attitude may help some people get through the day, it cannot actually stop one’s illness from progressing. “If you visualize your body receiving a cure, a cure will manifest,” a well-intentioned nurse told me on the day I was diagnosed, as if the “Law of Attraction” could be applied to the genetic mutation that caused my cancer. As if the rogue cells in my body could possibly know how much I wished for them to stop multiplying, and then simply bend to my will.

The most visible voice of dissent in this tyranny of “good vibes only” has been journalist Barbara Ehrenreich, whose work critiques the “sugar-coating” of cancer as a way of burying a grim reality “under a cosmetic layer of cheer.” Sadly, little has changed in the decade since Ehrenreich wrote about her own experience navigating a cancer diagnosis in a culture of positivity so relentless that it borders on delusional. After all, just last year, a company invented a high tech handheld mirror for cancer patients that only reveals your reflection if you smile. Otherwise, the implication is, you might as well not exist. You are nothing without compulsory optimism.

It’s no coincidence that “hopeful” people are more likely to spend money chasing miracles, as the line between blind optimism and gullibility can be blurry. Ehrenreich and others have written about the pink ribbon symbol as a crass corporate marketing strategy, but the problem goes beyond breast cancer, and has infiltrated the current wellness movement. Companies that sell unproven homoeopathic remedies in the forms of vitamin supplements, juices, essential oils, cannabis products, healing crystals, and other pseudoscientific modalities are banking on the fact that sick people will try anything for a potential cure. When “alternative” doctors peddle special diet programs and alkaline treatments, they anticipate that our desperation for a miracle will override our critical thinking skills and better judgment, and optimism is warped into something actively harmful.

The Path Of Living With Chronic Illness

The media plays into the miracle narrative with fantasy shows like Life Sentence. In episode three, we learn that Stella was cured because of her participation in an experimental clinical trial. While mainstream Western medicine certainly has a better track record compared to alternative therapies, clinical trials are notorious for disappointing results when it comes to curing cancer. Too many terminal patients are given false hope when they enroll in these studies expecting recovery, as new cancer drugs typically only prolong life by a few extra months rather than years. Life Sentence perpetuates the tendency to showcase medical anomalies rather than the average patient, whose journey is much more of a bummer.

When covering real-life cases of cancer, the media is often guilty of using what disability activists call “inspiration porn.” Sometimes, these are stories about the rare statistical outliers who beat the odds, framed to make it seem like they did so by virtue of impressive internal fortitude rather than sheer luck. (The message: if these model patients can cheat death, everyone else must be doing something wrong.) Other times, inspiration porn presents buoyant dying patients as examples to show healthy, able-bodied people how to live meaningfully — “as if each day is your last.” But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health. We shouldn’t be trotted out as motivational teaching tools to help everyone else put their own banal problems into perspective.

But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health.

In the vast majority of cases, terminal cancer patients do not make sudden miraculous recoveries, no matter how much they fight, rally, love their children, and don’t want to leave their families. No matter if they travel outside of the country for costly alternative treatments, or eat apricot pits or vape cannabis oil. They still die. They are prayed for, sometimes by hundreds of loved ones. They die anyway. If my own cancer metastasizes to my bones or organs before a cure is found, I will die, anyway.

I had to confront this horrific reality at thirty-one years old, and integrate it into how I understood the world. Now it’s everyone else’s turn. But it means facing some distressing truths about death, disease, and our sense of justice. First: the fact that humans are mortal, and sometimes we die too young, for no good reason, and by no fault of our own. (This clashes with several adages about God working in mysterious ways, never making mistakes or giving us more than we can handle. It also contradicts the widespread belief that we all ultimately get what we “deserve.”) Second: cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress. It takes time — years if not decades — for the latest laboratory discoveries to jump from petri dishes to mice to human subjects, so when you read about a promising new finding, remember that it won’t actually help the people who are living with/dying from terminal cancer today.

I had to confront this horrific reality at thirty-one years old, and integrate it into how I understood the world. Now it’s everyone else’s turn.

And third, medical miracles — to the extent they exist at all — are much more likely to happen against the backdrop of care that is affordable and accessible to everyone, something we don’t yet have in the contemporary United States. My chemotherapy treatments were about $20k each, and there were six of them. One night recovering in the hospital was $75k. I am lucky to have a robust health insurance plan (thanks, Obamacare) but I still needed to crowdfund for the various expenses that weren’t covered. In my cancer support groups, fellow patients with no insurance, or ones who live in states that did not expand Medicaid as part of the ACA, are on the hook for thousands of dollars they don’t have, during a time when they can’t actually go to work and earn income. The financial stress takes an emotional toll. I imagine it is easier to stay positive when you don’t have to worry about going bankrupt.

If there is anything at all to be hopeful about, it’s that the culture of toxic positivity might one day shift. The fact that “thoughts and prayers” are now recognized by many young Americans to be an insufficient way of addressing gun violence suggests we may be amenable to reevaluating our stubborn magical thinking in other areas. I sure hope I’ll be alive to see this happen.

*The name has been changed to out of respect for the privacy of her family

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]]> https://theestablishment.co/my-fight-against-an-eating-disorder-that-has-nothing-to-do-with-food-330238d8b5b7/ Fri, 15 Dec 2017 23:53:33 +0000 https://theestablishment.co/?p=2809 Read more]]>

Most people know about bulimia and anorexia. But few know about pica.

flickr/theilr

When I was younger, I would lie in bed and read stacks of Archie comics. Then I would slowly rip off pieces of the back covers and eat them until there was nothing left. I knew the dyes in the paper couldn’t be good for me; still, I couldn’t stop.

I ate many kinds of paper back then, but comic covers were undoubtedly my favorite. I relished the paper’s grainy taste, and the way it dissolved into a wet, chewy mass in my mouth.

And it wasn’t just paper that I craved—all kinds of non-food items routinely ended up in my mouth. Years later, while reading the book White is for Witching by Helen Oyeyemi for a university course, I would finally discover that my need to eat things had a name: pica.

I’ve been consuming items that aren’t food since I was a toddler eating sand. After entering school, I switched to pencils and erasers. I once had a plaid teddy bear; on its head was a little loop of material that could be used to hang the bear up. There’s a photo of me in my kindergarten classroom with the bear hanging from my mouth, chewing away on the loop. I also have an oversized comfortable jacket I stole from my dad when I was young, the corners of the collar chewed off to reveal the fluffy stuffing inside. I loved the feeling and taste of cotton fibers — they were so chewy, and I enjoyed pulling them out one thread at a time.

I remember the hot shame and guilt I felt when people caught me in the act — when yet another teacher told me to take that pencil out of my mouth, or when my best friend shot me disgusted looks as I chewed on a pink eraser until it disappeared. I would mumble words while gnawing on small bits of plastic at the back of my mouth; if people asked what I was eating, I’d panic and swallow. Once people tried to keep me from eating things, I started to slip items into my pockets to eat later when no one was around.

Why I’ve Made Myself Nearly Bald

When my mom told me to stop relentlessly chewing my hair, I began hiding behind books or my hands so she wouldn’t catch me in the act. Over time, I started cutting my hair shorter and shorter to keep it away from my mouth; when I decided to grow it out past my shoulders during the first year of university, I couldn’t help but pull out chunks of hair again to chew. A few months later, I cut it off into a short undercut, putting the hair safely out of my mouth’s reach once and for all.

No matter what I ate, there was a ritual to it, a process, that drew me in; each different substance had to be consumed a different way. I was careful to follow those rituals, whether it was slowly tearing strips off the Archie comic paper, or biting off tiny pieces of plastic and chewing them until they were malleable and could be swallowed.

When people think of eating disorders, they typically think of anorexia and bulimia. But millions struggle every day with other, lesser known disorders, like Ruminating Disorder (which involves people re-chewing regurgitated food) and Orthorexia (an obsession with proper or “healthful” eating).

Among these little-known disorders is pica, described by NEDA as “an eating disorder that involves eating items that are not typically thought of as food and that do not contain significant nutritional value, such as hair, dirt, and paint chips.” The disorder only encompasses items, NEDA emphasizes, that are not part of “culturally supported or socially normative practice (e.g., some cultures promote eating clay as part of a medicinal practice).”

Why Should You Become An Establishment Member For $5 A Month?

The roots of pica are varied. For some, the disorder is rooted in a need to correct a nutritional deficiency; iron-deficiency anemia and malnutrition are listed by NEDA as the two of the most common causes of pica, and this can cause pregnant women, too, to develop it. Pica has additionally been linked to autism spectrum disorder, intellectual disability, and schizophrenia, as well as trichotillomania (hair pulling disorder) and excoriation (skin picking) disorder.

Whatever the cause or risk factor, a lack of understanding about pica means many face stigmatization, and are unable to find help if they need it. This is especially concerning considering the condition seems to be growing in prevalence; one study found that hospitalizations for pica jumped a staggering 93% between 1999 and 2009.

Hospitalizations for pica in a 10-year span jumped a staggering 93%.

Health consequences include mechanical bowel problems, infections such as toxoplasmosis and toxocariasis, intestinal obstruction, and poisoning. In rare cases, it has even led to death. (In one documented case, a man died after consuming five kilograms of coins, necklaces, and needles; in another case, a man passed away after swallowing 10 buttons, a drawing pin, pieces of chain and bone, and a large amount of black foam rubber.)

Treatment varies depending on the circumstance. NEDA suggests first testing for mineral or nutrient deficiencies and correcting those; if that doesn’t work, it recommends turning to behavioral interventions.

My own recovery process hasn’t been easy — but it’s put me in a much better place now.

When I spoke with my mom to write about my experiences, she thought my pica stopped by the time I was 10 or so. In truth, I struggle even now.

I still put things in my mouth — like bottle caps and plastic earring backs — but for the most part, I just chew on them without swallowing. I’ve also started eating raw potatoes and raw pasta, which emulate the taste of non-food items. And to mimic what it’s like to break down dense, hard plastic through chewing, I’ve shoved handfuls of unpopped popcorn into my cheeks, moving the kernels around my mouth and grinding them into powder.

What’s really helped me is identifying the root of my pica: anxiety. Ritualistically chewing non-food items, I’ve realized, helps me feel in control when my mental state does the opposite. Since then, I’ve taken the time to manage my anxiety in healthy ways; with this progress, I’ve become less inclined to consume paper, or erasers, or strands of my own hair.

Eating disorder recovery is rarely linear, and I sometimes still eat non-food items, especially when I’m feeling particularly anxious. But these days, more often than not, my Archie comics remain just for reading.

If you think you might need help for pica or any other eating disorder, call the NEDA helpline at (800) 931–2237.

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]]> https://theestablishment.co/taking-down-medicines-monuments-2612a21693c5/ Wed, 06 Dec 2017 23:40:49 +0000 https://theestablishment.co/?p=2904 Read more]]> Much of modern medicine was built on racism and eugenics, and these dangerous racial disparities still plague the profession.

By Vidya

I can distinctly remember a moment during one of those many (many) days in my first year of medical school when we were sitting in lecture and learning about a disease.

Before my professor described the mechanism of the disease, which involved inflammation of the blood vessels, he paused and cleared his throat. “I want you to know that you may see this disease referred to as ‘Wegener’s granulomatosis’ in textbooks or amongst colleagues. However, we as a profession have decided that we are not calling it ‘Wegener’s’ anymore. Because Wegener, it turns out, was a Nazi.”

He said this solemnly, and then proceeded with the lecture, referring to the disease by its new names. First, in the 2000s, “ANCA-associated granulomatous vasculitis” was used; now, it is often taught as “granulomatosis with polyangiitis” (GPA).

Medicine is rife with old eponyms — diseases or body parts named after their discoverers or researchers — that are beginning to be replaced by more logical names for practical reasons. (The term “rectouterine pouch,” after all, tells us more precisely what we are talking about than “pouch of Douglas”).

But this was the first I had heard of the entire medical profession deciding to change an eponym for the sake of revoking honor from someone whose actions were now deemed immoral. And, more than that, the name change accompanied a small but repetitive teaching of why there was a new name — actively passing on the unethical history that led to greater understanding of a rare disease.

When other diseases gained new names, we were typically allowed to use the original eponym and the logical name interchangeably. But here? We were being told: Don’t use this old name. This man was a Nazi, who used tissue from Nazi prisoners to make his discoveries. And this moment of reflection on the history of this disease’s name happened almost every time I was taught about GPA.

It happened again when we learned about “Club cells,” the dome-shaped cells with short microvilli which serve to protect the lining of our lung’s small airways. We were told that they were originally named “Clara cells,” after the man who first described them in 1937. But Max Clara, we were told, was a Nazi — and so the pulmonary physician community made a dedicated effort in 2012 to have a name-change take effect in January of the next year. They rolled out the change systematically: for two years, they would put “Clara” in parenthesis after “club cell.” After that, “club cell” alone would replace all mentions of the name.

I started thinking about this movement to change names recently in the aftermath of the violence in Charlottesville and the national dialogue on removing monuments. The scientific name changes above signal a systematic effort to remove honor afforded to those who did immoral, horrific things to other human beings in the name of country-sanctioned medical research.

As a medical student, I am proud of the profession for pushing this change and I welcome the continued mention of the change in our medical training — with little effort, it allows us the important benefit of remembering the unethical history of the disease’s discovery without honoring it.

The Statues Must Come Down

But with each of these instances, there is also a growing feeling of disparity in this remembrance.

I rarely encounter the same explanation or historical interludes prefacing some of the tests we use in medicine today, which were developed in the context of racial exploitation in our own country’s history — such as spirometry to test lung function, or the immortalized cell line of Henrietta Lacks.

Soon after I learned how to do a speculum and pelvic exam in medical school, I happened to listen to an NPR Hidden Brain story which detailed the work of surgeon James Marion Sims. Sims, the so-called “father of modern gynecology,” developed the first speculum out of pewter in the 1840s — it was not markedly different from the very same device we use made of steel or plastic today.

There is an important benefit of remembering the unethical history of a disease’s discovery without honoring it.
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He is also famous for perfecting and pioneering a technique using silver sutures to repair vesicovaginal fistulas—an opening between the vagina and bladder that could result from complicated childbirth, which caused women suffering and social stigma from urine leakage.

In 1845, Sims purchased slave women with fistulas and housed them on his property for the purposes of medical experimentation geared towards gynecological research. In his memoirs, he names three of the at least 11 slave women he kept to experiment on — Anarcha, Lucy, and Betsey — brought to him by their owners. For the next four years, he did a series of experiments on them without anesthesia.

According to physician-historian Vanessa Northington Gamble in the NPR story, “there was a belief at the time that black people did not feel pain in the same way.”

In her book Medical Apartheid, writer Harriet A. Washington describes how, when the subjects of Sims’ experimental surgeries screamed in agony while he cut them with a scalpel, his medical assistants would forcibly hold them down. According to her research, women would be awake and naked while he did the procedure, often with many male assistants or interested physician colleagues watching.

One subject of his experiments, Anarcha, underwent 30 surgeries before he figured out how to properly heal her fistula. After that, Sims did the procedure in clinics — with anesthesia — to heal white women with the same condition. He started a women’s hospital after he moved to New York in the 1850s, where he gained his reputation as a surgeon treating women’s gynecological issues.

He reportedly repaired the fistula of a European empress, and became American Medical Association president in 1876 and president of the American Gynecological Society in 1880. According to Washington’s research, Sims also used black infants as subjects for experiments, using scalp incisions to pry skull bones into new positions based on the false belief that their skulls closed prematurely and caused lower intelligence; he was not blamed or persecuted when the infants died.

Washington writes that eugenics provided a contorted rationale for Sims’ and others’ experimentation on slaves:

“Many researchers argued that blacks were so different from whites — less intelligent, much less sensitive to pain, possessing numerous physical anomalies as well as markedly different patterns of disease immunity — as to constitute a separate species. Given this supposedly vast biological chasm between blacks and whites, how could scientists logically infer results of medical experiments from blacks to whites?”

Throughout August and September I started to see more articles in the press about Sims beyond the NPR story; people spurred by the events in Charlottesville started to organize to protest the statues that exist in tribute to him. There is a statue of Sims across from the New York Academy of Medicine, on Fifth Ave and East 103rd St in NYC. The New York Academy of Medicine has released a statement that it supports removal of the statue, writing that it does not belong to the Academy or its property and is in the control of the Parks and Recreation department.

In August, the activist group The Black Youth Project 100 held a protest in front of the statue, with protestors memorably wearing bloody-appearing hospital gowns. The statue currently still stands, though in the aftermath of Charlottesville, New York City declared that it will be going through a 90-day review of “symbols of hate on city property,” and as part of that, the Sims statue was discussed at a public city hearing in late November.

What Really Happened In Charlottesville

Yet another statue stands on the statehouse grounds in Columbia, South Carolina, Sims’s home state, with an inscription commending him for “treating alike empress and slave.” Columbia mayor Steve Benjamin said in an interview in August that the Sims statue is the most offensive one to him of all the statues on the grounds, and that it “should come down at some point.”

Kwoya Fagin Maples, creative writing instructor at the Alabama School of Fine Arts, helped to organize a protest in front of the statue that took the form of a poetry marathon, to show support for the hastening of its removal.

“There have been no preparations, to my knowledge, for it to actually happen. I suppose the protest was a way to support the mayor’s words in hopes that it would move us closer to giving the eleven or more women he experimented on retribution. I think the monument should contain images of the women he used for his discoveries. Personally, I think his image should not be the focus of the monument, if there at all.”

In September, Nature published an unsigned editorial originally entitled “Removing Statues of Historical Figures Risks Whitewashing History,” in which it argued that names or statues (specifically pointing out Sims) should not be removed but instead supplemented with additional plaques or “equally sized” monuments commemorating their victims:

“Sims was far from the only doctor experimenting on slaves in 1849, despite the fact that the abolitionist movement was well under way in the United States. And his achievements saved the lives of black and white women alike. But some historians argue that his experiments could have been considered unethical even for his time.”

The original article was met with strong backlash in many publications and on social media. Nature changed the title of the piece to “Science must acknowledge its past mistakes and crimes” with some content changes, and with an editor’s note apologizing for the original article being “offensive and poorly worded.”

A few weeks later, Nature editor-in-chief Philip Campbell published an apology statement in the journal:

“Removing such statues or other memorials does not erase these individuals or their acts from history. Beyond that fundamental error in the Editorial, the arguments throughout the piece — including an inappropriate framing of the example of J. Marion Sims — and its overall tone were naive and unintentionally served to reinforce the insidious notion that women, people of colour and minority groups do not have a place in science. This notion is wrong. We did not recognize how destructive the overall Editorial was and the effects that it could have.”

When I read about this saga in Nature, I remembered Wegener and Clara again. Why propose to build an “equally sized” monument to stand alongside the existing one, when one could build an entirely new monument altogether? In her NPR interview, Dr. Gamble proposed that his subjects Anarcha, Lucy, and Betsey be depicted instead. “I think what the inscription would say is ‘Betsey, Anarcha, and Lucy, the mothers of modern gynecology.’”

Apart from teaching medical students like me about the history behind the modern practice of gynecology, learning about the experimentation by Sims also brings up important conversations regarding the ability to consent.

In the Journal of Medical Ethics in 2006, physician L.L. Wall argued that “Sims’s modern critics have discounted the enormous suffering experienced by fistula victims” and that, based on Sims’ own writings, his original patients were “willing participants in his surgical attempts to cure their affliction.”

But can any people considered property actually consent? And would a woman truly “consent” to 30 surgeries without anesthesia? The argument is fallacious, dangerous, and openly ignores the intent with which Sims purposefully bought black women for his experiments, not to mention the eagerness of slaveholders to have their slaves returned in better condition for physical labor.

Can any people considered property actually consent? Would a woman a truly ‘consent’ to 30 surgeries without anesthesia?
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While Sims had been criticized by contemporaries as early as 1858 (by African-American surgeon Daniel Hale Williams, according to Washington), Wegener kept his Nazi ties secret for decades. He had joined the Nazi Party in 1932 and it is speculated that he participated in Nazi medical experimentation.

The American College of Chest Physicians awarded him a “master clinician” prize in 1989, a year before his death, but rescinded it after his secret Nazi past was discovered 11 years later through the work of two physicians researching his life in preparation for an intended celebratory article. Sims, for his part, experimented on living women — further exploiting their already harrowing reality of exploitation, using eugenics-based logic to give them no pain medication.

But even more important is the fact that, though Sims practiced 100 years before Wegener and Clara, American assumptions based on false theories of racial difference are still held by some physicians today.

A study last year from the University of Virginia found that a substantial portion of white medical students and residents surveyed believed that black people are biologically less sensitive to pain; in their results, 40% of first and second-year medical students and 25% of residents thought blacks have thicker skin than whites.

American assumptions based on false theories of racial difference are still held by some physicians today.
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One aspect of knowing the history of American medical experimentation is also understanding and empathizing with the views of black patients who continue to endure bias today. My medical school classmate Shelley Thomas is passionate and outspoken about working towards racial justice in health care, and was one of the classmates I interviewed for this article.

She cited acceptance of intrauterine devices (IUDs), a form of long-acting contraception, as one of many examples of history informing patient skepticism. “There are so many populations that are skeptical of IUDs. Some people think, ‘she’s not looking at the statistics, this is just lack of education,’ without knowing the history of forced sterilization,” she explained.

“When you’re talking about putting something inside of a black woman that will stop her from having kids for 5–8 years, the history is there, and without knowing that history, we can make a lot of assumptions about why people are so hesitant about a lot of these different forms of medical advancement.”

When I worked as a clinical research coordinator, my required online training included a section on research ethics that described the history of the Tuskegee trial. Wouldn’t it make sense to require us to preface our learning about, say, the speculum exam with a lesson about the man behind the device?

I often wonder why these histories don’t already exist in medical curricula; why I come across it almost solely in the lay press. I interviewed Dorothy Charles, a classmate a year ahead of me who is an organizer for the national White Coats for Black Lives movement.

“It would be a great to have syllabi on this in medical school,” she said. “We need medical students to learn these social justice issues in medicine, and be educated about the racial history and myths in medicine.”

She suggested having people who are experts in these topics teach it — not necessarily physicians, but instead social scientists or historians. Some might argue medical school is not the place for medical history, but as both Charles and Thomas pointed out to me, then why comment on the Wegener’s name change at all?

How Medical Schools Are Failing The LGBTQ Community

And, Thomas added, “when we don’t address it and don’t talk about it, now you’re having a child whose pain is being ignored because a resident that has gone through our medical education system thinks that black children don’t experience pain the same way that white children do.”

(Studies show that black children are less likely to receive appropriate pain medication as compared to white children, even for a condition such as appendicitis.)

I wonder if having increasing black representation at academic medical centers would push the process of learning about and introducing stories like that of Sims into medical curricula. In an article in the Journal of Urology in 2011, two urologists write that while lay journalists and historians have increasingly studied and critiqued Sims’s surgical discoveries and accomplishments, “relatively little mention is found in standard urology textbooks or journals.”

“Medical sources have continued to portray him unquestionably as a great figure in medical history. This division keeps the medical profession uninformed and detached from the public debate on his legacy and, thus, the larger issues of ethical treatment of surgical patients.”

The authors found that urological textbooks referred to Sims repeatedly as a surgical innovator in their sections on vesicovaginal fistulas. Though a more recent edition of a urological textbook did have a paragraph on the controversial ethics of his practices, it concluded with: “It is generally believed that Sims was trying to enhance the lives of these women and was in concert with accepted mores.”

Before inpatient rounds one morning earlier this year, Thomas gave a short presentation on GPA, which one of her patients suffered from. “GPA used to be called Wegener’s, but they changed the name — I have some thoughts about that, which we can talk about later,” she said. After the presentation, her resident asked her about it, and we had a short discussion as we walked to the first patient room about the issues with changing some names in medicine while continuing to honor others. But these conversations are difficult to initiate as a medical student who is constantly in the position of being evaluated by our superiors.

I hope that one day, across medical schools, before we are even allowed to do a pelvic exam, we are given the context of Sims and his experiments.

“Just like you do with Wegener’s, give that little one slide about the complicated history here,” Thomas told me. “I think that begins the process of honoring these women who suffered.”

When we talk about birth control, we need to remember that cis straight women aren’t the only stakeholders.

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By Neesha Powell

Originally published on Everyday Feminism.

I ’ve been on and off different types of birth control for the past 15 years. Last year, I got Mirena, an IUD that’s 99 percent effective in preventing pregnancy and lasts up to 6 years.

While dating cisgender straight men in the past, I used birth control to prevent pregnancy. And although I can’t get pregnant by my current sexual partner, my IUD is still a lifesaver because my periods have become lighter, shorter and less painful.

Queer and trans people of color, like myself, however, are almost never reflected in the visible fight for birth control rights. The poster child of the mainstream reproductive rights movement is usually a middle-class, cis, heterosexual white woman — everything that I’m not.

In the resistance against Pres. Donald Trump’s war on reproductive rights, stories like mine aren’t centered due to myths that LGBTQ+ folks don’t use birth control, get abortions, or have kids. In reality, we do all of these things, and we desperately need better access to them.

Queer and trans people of color, like myself, however, are almost never reflected in the visible fight for birth control rights.

Trans, gender nonbinary,and queer folks experience barriers to culturally-competent reproductive healthcare because most doctors don’t understand our bodies or our sex lives. Legislative attacks on birth control make it even harder for us to get the good care we deserve.

One of Trump’s most recent attacks on reproductive healthcare happened on Oct. 6, when the Department of Health and Human Services issued new rules that allow employers to opt out of covering birth control on their health insurance plans based on moral or religious reasons.

This is a part of Trump’s plan to dismantle Obamacare, which made contraception a preventative service and required employers to pay for it. These new rules open the door for future laws that allow discrimination against LGBTQ+ people based on sexual orientation and gender identity.

When we talk about birth control, we need to remember that cis straight women aren’t the only stakeholders. As a pansexual nonbinary woman, birth control changed my life for the better, yet narratives like mine are missing from the media.

The erasure of LGBTQ+ folks from conversations about birth control is harmful, for a number of reasons. Here’s why trans and queer voices must be centered in the fight for just access to birth control:

1. We need birth control for the same reasons as straight folks: to prevent pregnancy and to treat medical conditions.

This may be a surprise to some, but trans and queer people have the ability to procreate and to engage in sex that results in pregnancy. It’s frustrating that birth control is only marketed to cis straight women when LGBTQ+ folks need it just as much.

Evana Enabulele, a Black queer parks and recreation worker living in Seattle, uses a birth control implant called Nexplanon for both pregnancy prevention and Polycystic Ovary Syndrome (PCOS), which causes irregular periods that are abnormally heavy and long.

She enjoys telling others about her birth control implant because many people think their only option is taking pills. It takes as little as 10 minutes to insert the tiny rod into the upper arm and is more than 99 percent effective in preventing pregnancy.

What To Know About That New Study Linking Birth Control To Depression

Being on birth control makes Enabulele’s life more stress-free, not only because she can’t get pregnant, but also because she now gets a regular period. When her PCOS was untreated, she worried about not ever being able to conceive because her periods were so irregular.

Enabulele feels personally attacked by the Trump administration’s new rules allowing employers to deny covering birth control.

ChiChi Madu is a Black queer LA resident working in the startup industry who got an IUD for free at Planned Parenthood 6 years ago when she was low-income. She’s also appalled by Trump’s actions.

“I think it’s downright evil to take away someone’s ability to access healthcare,” says Madu, who got on birth control to prevent pregnancy when she had cis male sexual partners, as well as to regulate her mood and decrease the flow and frequency of her period.

Although she now gets health insurance through an employer that holds progressive beliefs, she knows that other LGBTQ+ people aren’t so lucky.

“I have to think about all these people who don’t have my same circumstance and so it’s aggravating and disheartening. It’s tough to think about, to be honest,” Madu says.

2. There are challenges keeping us from getting birth control when we need it — including fear of discrimination from medical providers and lack of access to health insurance — but not being able to get birth control can have harmful consequences for us.

Going to the doctor is not fun for a lot of trans and queer people, especially when we have to talk to them about the most intimate parts of our lives.

Lucia Leandro Gimeno, the director of Q/tpoc Birthwerq Project in Seattle, says that accessing reproductive healthcare can be an anxious experience for trans and queer people, especially trans and queer people of color.

The fear of being discriminated against by their medical provider is a major barrier. The fact is that most medical providers do not get adequate training in working with LGBTQIA+ folks.

“I think that if you’re white and trans, it’s not easy, but whiteness generally helps you better navigate a lot of systems, whereas if you’re a trans person of color, doctors just kind of look at you sideways,” says Gimeno, who’s an Afro-Latinx queer transmasculine femme.

Most medical providers do not get adequate training in working with LGBTQIA+ folks.

While seeking out reproductive healthcare, LGBTQ+ people are often shamed for our sex lives or treated differently because of our marginalized identities. Even well-intentioned doctors don’t know much about how we have sex and how birth control impacts our bodies.

Additionally, LGBTQ+ Americans have barriers to getting birth control because we’re almost 10 percent less likely than straight Americans to have health insurance, and 20 percent of us are living in poverty.

23-year-old Enabulele’s scared of what will happen if Obamacare’s repealed because she could be kicked off her dad’s insurance plan. Her birth control implant was only $10 under her father’s insurance and would have cost $800 without it.

When trans and queer people can’t access the reproductive healthcare we need, we’re forced to go underground to get it. Some trans women buy hormones on the black market because they can’t get them from a doctor, and they sometimes end up being toxic.

Trans and queer folks deserve access to birth control that is safe and low-cost or free. That can’t happen when we’re left out of conversations about contraception.

3. We’re excluded from the reproductive rights movement, even though we actually have the hardest time getting adequate healthcare.

Our society loves to gender things, which led to “reproductive health” becoming synonymous with “women’s health” — cis women’s health, in particular.

Cis women refuse to prioritize trans women’s reproductive rights because they’re afraid of being forgotten about. But in reality, the reproductive rights movement isn’t winning because they’re ONLY representing cis women.

When we fight for barriers to accessing reproductive healthcare to be removed for trans and queer people of color (POC), everyone benefits, even cis straight women, because they face some of the same challenges.

Doctors Must Stop Shutting Out Marginalized Groups

Furthermore, trans and queer POC are currently leading countless grassroots movements to achieve social justice for us all. It’s only right to center their health and well-being when they’re literally putting their bodies on the line.

Gimeno says that reproductive rights organizations should include trans people of color (TPOC) in leadership and decision-making bodies, build projects that center TPOC and work in coalition with TPOC without tokenizing them.

Reproductive rights organizations should also embrace the values of reproductive justice, which centers women of color, LGBTQ+ folks and other historically oppressed groups and their right to make their own decisions about their bodies and their families.

When we approach birth control access with a reproductive justice lens, we acknowledge that certain groups, including trans and queer people, have a more difficult time getting contraception than others.

Fighting for the most oppressed to have access to birth control is the only way to ensure that birth control is one day accessible to everyone who needs it.

The state of Oregon recently achieved a huge reproductive healthcare victory, passing the Reproductive Health Equity Act of 2017 that covers all reproductive health services (including birth control) at no cost to all residents, regardless of gender identity, income or citizenship status.

It’s going to take a lot of work for similar legislation to succeed in other states, but I believe it can happen if the reproductive rights movement fully embraces trans, gender nonconforming and queer people.

Birth control rights will continue being eroded if our leadership isn’t centered.

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