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Max (Meg Morris):
I’m sorry to say things are pretty bad here. I wonder if you received the emails I forwarded to you?
a lot of people I am talking to do not realize that we are in immediate danger of them not hearing from me again, and I am trying to signal to people that I need help, but it is not working.
I will definitely die if I do not get an income stream sorted out for emergency survival needs. People are not responding and I think I’m going to die.
I have been saying this too many people but it seems to have desensitized them and I am not able to get needs met that are likely to kill the body imminently.
if I lose my ability to communicate from the physical damage, I will be tortured to death with no ability to affect how people care for me, which is the most terrible of death sentences for someone in my position.
The Doctor Doesn’t Listen to Her. But the Media Is Starting To.
Physicians have long dismissed or downplayed women’s sexual- and reproductive-health concerns—but in 2018, stories about “health-care gaslighting” are consistently breaking through to the mainstream.
Ashley Fetters is a staff writer at The Atlantic.
Aug 10, 2018
Bettmann / Getty / The Atlantic
After a while, the true-life horror stories women tell about their struggles to get reproductive health care start to bleed together. They almost always feature some variation on the same character: the doctor who waves a hand and says, “You’ll be fine,” or “That’s just in your head,” or “Take a Tylenol.” They follow an ominous three-act structure, in which a woman expresses concern about a sexual or reproductive issue to a doctor; the doctor demurs; later, after either an obstacle course of doctor visits or a nightmare scenario coming to life, a physician at last acknowledges her pain was real and present the whole time. Sometimes there’s a quietly gloomy boyfriend or husband in a secondary-character role, frustrated by the strain his partner’s health issue is putting on their intimacy.
That many women have stories of medical practitioners dismissing, misdiagnosing, or cluelessly shrugging at their pain is, unfortunately, nothing new. Research cited in the Journal of Law, Medicine & Ethicsin 2001, for example, indicated that women get prescribed less pain medication than men after identical procedures (controlling for body size), are less likely to be admitted to hospitals and receive stress tests when they complain of chest pain, and are significantly more likely than men to be “undertreated” for pain by doctors. And there’s a multi-million dollar industry of questionable alternative health remedies that was arguably built at least in part on a history of doctors being dismissive toward women’s bodily health.
How doctors take women’s pain less seriously
But in 2018, these stories of neglect and unhelpfulness within women’s health care, especially women’s sexual and reproductive health care, are bubbling up to the surface—being documented, circulated, and acknowledged by public discourse—in curious abundance.
It started early in the year. In January, a widely cited Vogue cover story on the tennis great Serena Williams, who gave birth to a daughter in September of 2017, told the harrowing tale of how Williams had to urgently insist to the hospital staff in her recovery room that what she was experiencing after her C-section was a pulmonary embolism in order to get the treatment she needed to stay alive. “The nurse thought her pain medicine might be making her confused,” the story reads. A month later, Vogue published an essay by the Girls creator Lena Dunham on her choice to have a hysterectomy at age 31 to end her struggle with what she understood to be endometriosis. “I had to work so hard to have my pain acknowledged,” she writes. “And while I’ve been battling endometriosis for a decade and this will be my ninth surgical procedure, no doctor has ever confirmed this for me.” After her uterus is removed and she wakes up in a recovery room, she writes, the doctors are eager to tell her she was right: her uterus is “worse than anyone could have imagined.”
Then, in April, The New York Times published Linda Villarosa’s revealing report on the dangerous endeavor of being black and pregnant in America, a phenomenon partly attributed to medical practitioners’ “dismissal of legitimate concerns and symptoms.” The story’s primary character, 23-year-old New Orleans mother of two, Simone Landrum, recalls being told by a doctor to calm down and take Tylenol when she complained of headaches during a particularly exhausting pregnancy; those headaches were later found to be caused by pre-eclampsia, a pregnancy complication that causes high blood pressure and can result in the placenta separating from the uterus before the baby is born. This happened to Landrum, and her pregnancy ended in a stillbirth.
The stories kept coming. Netflix’s The Bleeding Edge, a documentary released last month, is primarily about the poor testing of many medical devices on the market, but it nonetheless also functions as an indictment of carelessness toward women’s health at the regulatory-body level. Three of the four primary narratives are about medical devices hastily approved by the FDA and marketed to women as safe, easy solutions for fertility- and childbirth-related issues. One prominently featured woman whose medical device—the birth-control implant Essure—lands her in the hospital so many times she loses her job, her home, and her kids over the course of the documentary, recalls being told by a doctor that her abnormally heavy, persistent vaginal bleeding after its insertion is “because she’s Latina” and that her problems are all in her head.
The new KCRW podcast Bodies, a series about medical mysteries in women’s health that launched in July, kicked off its run with the story of a woman in her twenties who experiences deep, burning pain during sex and is initially told by a doctor that nothing’s wrong, lots of women have pain during sex, and that she should just wait and it’ll probably go away. After getting a referral for a specialist from a friend who visited 20 doctors over the course of seven years before getting a diagnosis, she’s diagnosed with and successfully treated for a type of vulvodynia—which the American Journal of Obstetrics and Gynecology describes as “common” (though “rarely diagnosed”).
Sasha Ottey calls this phenomenon “health-care gaslighting.” Ottey founded the Atlanta-based nonprofit PCOS Challenge: The National Polycystic Ovary Syndrome Association in 2009 to raise awareness of PCOS, a hormonal disorder affecting the ovaries that’s often linked to infertility, diabetes, and pelvic pain. Despite the fact that PCOS was first identified and researched in 1935 and the CDC has estimated it affects some 6 to 12 percent of adult women in the United States, many doctors still don’t recognize the symptoms. Women with PCOS and similar conditions like endometriosis and uterine fibroids, Ottey says, “have been told to suffer in silence.” Additionally, because PCOS often causes obesity or weight problems, many women with PCOS experience not just sexism but what Ottey calls “weight bias” in the health-care system. “Many women and young girls are told, ‘Oh, it’s all in your head. Just eat less and exercise more,’” says Ottey, who herself recalls being initially instructed by an endocrinologist to lose weight and come back in six months. “People who are following an eating plan and present their diaries to their physicians or nutritionists will be told, ‘You left something off. You’re lying. You’re not doing enough.’”
When missed periods are a metabolic problem
Ottey, who spearheaded the PCOS Challenge’s first-ever day of advocacy on Capitol Hill in May, has noted the recent shift in how—and where—women talk about their struggles getting the sexual and reproductive health care they need. “We’re at a critical juncture in women’s health, where women are now feeling more empowered to speak up. Because frankly, we’re frustrated,” she says. “We’re frustrated with the type of care that we’ve gotten. We’re frustrated that it sometimes takes someone decades to get a diagnosis. It’s been a year, or a few years, of being empowered and emboldened.”
Katherine Sherif, an internist at Jefferson University Hospital in Philadelphia and the director of the hospital’s women’s primary care unit, says she hears “day in and day out” from patients “about how they are not listened to [by other doctors], how they’re blown off, how a clue was missed.” Sherif believes most of the minimization of women’s health concerns is “unconscious” on the part of both male and female doctors, but blames general societal sexism for the gaps in women’s sexual and reproductive health care. Men with sexual and reproductive dysfunction have to fight for the care they need sometimes too, she points out, but “to a lesser extent” from what she’s seen.
In her 23 years practicing medicine, Sherif has received a lot of thank-you notes from women she’s treated—and “they don’t say ‘Thank you for saving my life’ or ‘Thank you for that great diagnosis,’” she says. “They say, ‘Thank you for listening to me.’ Or ‘I know we couldn’t get to the bottom of it, but thank you for being there.’” So Sherif sees a common theme in the recent flurry of high-profile expressions of disappointment in women’s reproductive health care, feminist protests against President Donald Trump, and the #MeToo movement: All three, she says, result from women feeling that their complaints, concerns, and objections aren’t being listened to.
“Perhaps it parallels what’s changing in our society,” Sherif says. “When we shine a light in those dirty, dark corners, I think it may give us courage to shed light on other things.”
Ottey, meanwhile, believes women’s increasing candor about their health- and health care-related frustrations can be traced back to the advent of social media. Ottey describes her own struggle to finally get a diagnosis and a treatment plan for PCOS in 2008 as one that made her feel “absolutely alone,” but in the years since, she says, she’s seen women with similar conditions and complaints find and support each other on platforms like Facebook and Twitter. “Women see other women, and other girls, speaking up,” she says.
Ottey’s social-media strength-in-numbers theory is borne out in The Bleeding Edge, too: Women whose health deteriorated after getting the Essure birth-control device implanted eventually created an advocacy campaign after finding each other through a Facebook group launched in 2011. Thirty-five thousand women had joined by the time The Bleeding Edge was filmed.
Angie Firmalino, the Facebook group’s founder, remembers being surprised at how many women quickly joined the group, despite it being a project she’d started just so she could warn her female friends about the device. “We became a support group for each other,” Firmalino says, as a montage of selfie videos women have posted to the group page play onscreen. “The day I was implanted, I left the hospital and I was in pain,” says one woman. “They told me to take some ibuprofen and it’ll get better,” says another.
When Firmalino researched the process by which Essure was approved for sale and implantation, she found the FDA hearings had been videotaped, but the video company that owned the tapes would only release them to her for several hundred dollars. So she posted on the Facebook group asking for donations to buy the video—clips of which are repurposed in the documentary and account for its most chilling moments. They raised $900 in 15 minutes.
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https://t.me/NotesOnRefuge (join our live conversation on Telegram)
‘ Why This and Why Now:
I was supposed to have help doing this around my birthday. I’m making this happen myself, because I guess I’m still on my own.
But other Black people don’t have to be. Representation matters, and the creation of MOlpZNgy0SYbtSjC3the Intersectional Non-Monogamy exists to reweave Blackness back into history and to imagine Ebony-filled futures.
Nearly five years ago, Intersectional Non-Monogamy wasn’t on anyone’s radar. This year, at least several nonBlack folks who knew of my work have claimed to be teaching or talking about it. Either way, they’re making money and building social capital off of a Black nonman’s idea, which is disturbingly normal.
Anyway, all I ever want is to knit my kin together and provide integrated education and services to those who need it most.
So I’m giving this another go right now, especially because I paid out of pocket to make and print the special bookmarks because I wanted to give for my birthday, but that didn’t happen.
Diasporic kin, especially the multiply marginalized, sign up to receive a signed copy of Aro Eros Arrows and a bookmark:
If you’re a bookstore, book club, have little neighborhood libraries, or want copies for your class, please use this form:
People with means, money, and who lack melanin, please sign up to sponsor a copy (there will be options for you to purchase one yourself in addition to sponsored copies). There’s no limit on how many books you can sponsor:
About the Book:
“Love is not my motivation; it is my state of being. You cannot tempt me with the promise of your scraps when I feed myself.”
If aromantic people primarily desire friendship or nonromantic partnerships over romance, then how can they practice any recognized form of non-monogamy? And polyamory the practice of having multiple intimate, loving relationships is just for romantic people, right?
The truth is, being aromantic or asexual usually means there’s an emphasis on friendship, which is inherently non-monogamous. Being aromantic means loving a bit differently, but in ways that matter just as much. Knowledge about these experiences and identities can help with clarifying relationship needs, bringing up new possibilities and better choices for relationship format ion, and for turning friendship into something more than a simple throwaway stand in for some potential romantic partner.
Communities built on friendship rather than competition (and let s face it, competitiveness is usually encouraged when it comes to romance) would be more cohesive, less prone to the power dynamics that lead to systemic abuse, and can actually cultivate true agency.
There are plenty of books out there already for straight, white, romantic folks. This is the book Black queer aros never got.
About the Author:
Michón Neal is an autistic BlaQueer impossible alien Othergender Dragon who tattoos trees with the queerest most sinister ink and hurts all over all the time.
#disabilities #cuilverse #intersectionalnonmonogamy #BlackisBeautiful #abuseculture #emotionalliteracy #AroErosArrows #representationmatters #accessibilityisarequirement #actuallyautistic #MichónCon #aromantic
I MAY NOT BELIEVE IN MYSELF RIGHT NOW
BUT I’M GOING 2 IN A MINUTE
+ THEN U BETTER RLY WATCH OUT
Kelly Wood writes,
‘ I’ve been living away from my mold infected home for 3 months while it gets remodeled recovering from black toxic mold exposure #stachybotris – I have made a lot of progress but it’s slow going – tomorrow I’m hosting a party to raise awareness for people who’ve been affected by this biological weapon (yes- that’s how they make those!) I’m getting ready for my party & I’m noticing my heart is racing and my skin is burning, could this be from all the excitement over tmrw? Aaah, I wish!! Nope, there’s mold hiding behind the jets causing me to be symptomatic… I’m really upset, how could this happen the day before my event? The difference between myself & most other people is this: I have people that will come pray for me, I have someone making me lunch, I have a husband who go’s to work everyday to pay for my medical bills, I have medicines at home to help me detox and I get to go sit in. Infrared Sauna later ….. u see most people don’t have these luxuries, so that’s why I’m hosting this shin-dig ….. join us tmrw evening to celebrate the fact that I’m still alive and let raise awareness and support for people that aren’t as fortunate …. much love
This is Morgan Faulkner
She is my dear friend living in a tent in the middle of nowhere because her health problems are so severe she’s practically lost everything
Well it’s going to be restored back to her .. proceeds from the party go straight to her ❤️❤️❤️ see ya tmrw night ❤️
RSVP’s are appreciated ❤️❤️ ‘
The Shadowbag, Intuitive Public Radio, Oct 13 2018 #WhyIDidntReport
Todd McCaffrey writes,
‘ We’ve got to change the attitude towards rape. It affects us all. ‘
Corey Bennett Williams writes,
‘ TW: Rape. Also, I’m mad, so my spelling sucks.
Ya’ll. I was raped and reported it. Went to the hospital. Got a very traumatic rape kit. 50 hairs pulled from my head and vagina- at the root. Vagina and anus painted blue and photographed to show tears and fissures. SANE (sexual assault nurse examiner) was kind, but volunteers for that job after her regular shift. By the time she examined me and collected blood, the drugs they put in my drink were no longer present.
At that point, I was a thirty something Ivy League educated mother of three. I was raped after chairing a fundraiser for a children’s museum. I answered every question. I was photographed from every angle, bruises measured (some in the shape of fingerprints) and photographed.
I hired attorneys. Defense attorneys to assist the DA in collecting evidence. A $20,000 retainer.
I say all this to say that (other than being black) I had every advantage a woman can have in reporting.
Guess what happened? Not a damn thing. I had to push and push to even get my rape kit tested. It took nearly a year, even with my well known attorneys pushing. The district attorney declined to prosecute. The video of them buying condoms wasn’t enough. The ever changing story they offered- there was no sex and then after they learned I had the rape kit done- admitted that there was sex but claimed it was consensual. Also, not enough.
I had been raped before and not pursued criminal prosecution. This time I did. It was awful. Traumatic. Insanely stressful on all of my relationships and was a big part of the end of my marriage. I was on truvada and kaletra prophylacticlly to prevent hiv. I lost weight from the drugs- vomiting and diarrhea . I couldn’t sleep. I couldn’t watch a movie or eat at a table with anyone behind me.
So why don’t women not come forward? I’ll tell you why. Because we don’t actually prosecute rapes in this country. Whether someone sees their rapist arrested is up to the DA. When we do prosecute rape, we tear the victim apart. And more than 95% of the time, we don’t put rapist behind bars.
So, why don’t women come forward? Because they’ve done the math and they know the overwhelming likelihood is that it won’t matter.
So, when a woman sees her rapist run for a prominent position or be elevated to the highest court and the land and finally decides that she will come forward….do you know what that is? It’s a gift to us. It is her sacrificial gift.
My rapist still lives in our community. He opened an after school activity for teens. He has had charges brought against him since mine. But he’s still free and out there. It’s a matter of time until he does it again.
This next time, will we believe her? How many women will he rape before we actually see justice?
It is way past time for people to stop sitting on the side lines and assessing who is right. I can almost guarantee statistically that she is. And, even if she’s not we are NOT EVEN TALKING ABOUT CRIMINAL CHARGES. If he loses a job and this is not true it sucks for him. But it’s not the end of his life. It’s a damn job.
If you have other reasons that you’re ignoring the overwhelmingly likelihood that he did this, it’s on you. Want to do something for rape victims here are some options:
– volunteer at your rape crisis center.
– educate yourself. Don’t ask victims. Read some books. I’ll post options later.
– believe them. Listen without judging.
And if you can’t do any of those, keep your opinions to yourself.
EDITED 9/25/2018: Friends. I have been absolutely overwhelmed and humbled by the response to the post describing my assault and it’s aftermath. I have been heartened by so many of you who have listened to me and believe me.
And I’ve been brought to tears by the hundreds of your stories that you’ve shared with me. In response, I have created a community page for survivors like you and me. The goal of the Scarlet Letter Society is to give us a place to share our stories and support one another.
And in addition, we will be producing a set of sharable videos to help the world at large learn more about sexual assault and it’s impact on our lives. I hope that by dispelling some common myths and by bring our stories into the light, we can make the change we seek.
So please follow The Scarlet Letter. That’s where I’ll be posting on this critical topic, and where you are welcome to as well.
Corey Bennett Williams
most people cannot tell the difference between being falsely accused and being a rapist.
this is something we are going to have to fix.
Oh, thank you! I’ll copy the post I just made on Facebook
Max (Meg Morris):
Stepped out of my flat to stop a fight and unfortunately the people who were fighting fell against my door and locked me out!
Would anyone be willing to lend me £100 till Monday for a locksmith?
(It’ll probably only be 59, but it’s 100 if I need a new lock – I can pay you back 41 right away if all goes well.)
*Please don’t worry – I’m safe, warm, not worried, and definitely NOT in need of anywhere to stay, thank you! 🙂 *
‘ What’s Michón Con for and why does it exist? How is it different from other cons? What does “accessible from the foundation up” actually mean? How can Michón Con best be supported? What’s the difference between the reparational subscriptions and the tickets? What does race have to do with it, anyway?
These questions and more are answered in this video.
Pay reparations/subscribe to Michón Con: https://drove.com/.Cbc
Purchase tickets for yourself and/or others: https://drove.com/.BLh
Vote for presentations and workshops: https://drove.com/.BOO
#AroErosArrows #representationmatters #accessibilityisarequirement #reparationsnow #disabilities #cuilverse #intersectionalnonmonogamy #BlackisBeautiful #abuseculture #emotionalliteracy #conference #MichónCon ‘
OCT. 5, 2018 / 9:10 AM
PET scans show fibromyalgia patients have inflammation in the brain
“Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important,” said researcher Marco Loggia.
Serena Gordon, HealthDay News
Journal of Business Ethics
Mental Heath as a Weapon: Whistleblower Retaliation and Normative Violence
Excommunicate Me from the Church of Social Justice https://t.co/pTHTLJesMT https://t.co/pTHTLJesMT
— Will Hall (@willhall) October 12, 2018
Deck: The Shining Tribe Tarot
Spread: Card of the Day
Date: Fri Oct 12 03:31:33 EDT 2018
Speaker of Stones (Upright)
See what there is to see.
Hear what there is to hear.
Touch whatever you touch.
Speak the thing you must speak.
This remarkable image of a woman formed out of geometric shapes derives from a twenty thousand year old engraved mammoth tusk discovered in Moravia, Czechoslovakia. The spiral of red dots above the Speaker comes from the cave of Pech-Merle in France, where pre-historians also found a group of graceful nude female figures painted on the walls. The series of abstract forms on the bottom of the card are part of a variety of signs, most of them abstract and therefore suggestive of conceptual symbolism, found among the giant naturalistic paintings in the great cave of Lascaux, whose bull appears on the card of the Emperor. The card thus forms a montage of images from European pre-history. Through the silent voices of such paintings and carvings on rock and bone, these vastly old cultures still Speak to us, telling us of the power of the Earth and the mysteries of the human intellect.
To visit the great caves, or simply to look at photographs of their marvels, is to lose any thoughts of our early ancestors as primitive, or without culture. These are works that not only require artistic talent but show unmistakable signs of both developed concepts and aesthetic tradition.
Some time after drawing this picture, I came across a discussion of the engraving in G. R. Levy’s groundbreaking history of religion, The Gate of Horn. Levy described this picture as a possible prototype of the later cultural idea that the cave formed the Goddess’s body. She compared the geometrized forms to the ground paintings of the Australian Aborigines (entwining two major strands of Shining Woman Tarot). She further described the radiating lines around the central oval in the belly area as suggesting a bull-roarer, the whirling instrument made of bone to mimic the voice of the spirits. And so we find the idea of Speaking literalized in the picture itself.
The Earth speaks to us most fully through Her creatures, the millions of species which have poured out from Her body, which once was lifeless rock. The vulva shape in the lower “abdomen” radiates lines of energy, like a shout to celebrate the endless Speech of creation.
We see two direct images of speaking here, one from the center (think of the old expression, “gut knowledge”), the other from the womb. This is speech of the body, and of our deepest ways of knowing and communicating. And yet, the mind is included as well, both in the abstract signs all around her, and the way the carvers created a human form from geometric shapes. The Speaker of the Stones, with its connection to the Earth, and its very ancient origins, is the most powerful of the Speakers, for she speaks absolute truth.
Divinatory meanings: Speaking from total conviction. Persuading others through the power of one’s own certainty. Fecundity, fertility in many aspects, wealth. Artistic or intellectual accomplishments, societal recognition.
Reversed: Uncertainty, needing approval from others. Keeping silent on something you know or believe very deeply.
Presented by The Shining Tribe Tarot app from The Fool’s Dog.
Salem Leonard-Goosby writes,
‘ There are some exciting things happening here at Holding Patterns and High Tea.
First, in order to be able to more accessibly provide you the content you love and expect, I have set up a podcast for times when i am flaring so bad I can’t really write.
Second, The Infinite Michon Neal and I are going to be starting a podcast specifically on the intersections of being aromantic and autistic. I am sure there will be a lot of non-hierarchal ethical non-monogamy talk as well since it is relevant to both of our lived experiences. ‘
‘ “What grows inside of them is just disgusting.”
Show notes for this episode coming soon.
For published audio entries to the Radiolist previously, here is a link to our original document:
For previous entries to Radiotext, our original document is here: