Written by guest contributor Courtney Duff
[TRIGGER WARNING: descriptions of abuse, mental, physical, or verbal.]
Two major stories made their way across my desk this June. The first was the story of Jay Kallio, a trans man denied health care due to his gender identity and gender presentation in 2012. The second was Birth Anarchy’s interview with Kimberly Turbin, survivor of a forced episiotomy caught on tape that ignited the birth-worker’s community into action late last year. These two stories made me think: how common are these experiences? How many similar stories are out there that don’t come across my desk, due to silence out of fear or negative stigma surrounding the issue? It took until June of 2015 for me to be made aware of these stories.
Doctors are implicitly trusted, but they don’t always treat their patients, especially those who are queer or of other identities, with respect. By asking around and collecting research, I’ve heard horror stories that are horrifying and exceptional stories that are heartwarming. But in the end, we have to ask ourselves what we want from our doctors and how we deserve to be treated. These stories aren’t indicative of all doctors, but of some, and knowing what to look out for is important when it comes to selecting a care provider.
Kimberly Turbin is not the first woman to report obstetric violence or forced medical procedures, but she’s the latest, and the birthworker community (a community of people, primarily women, who work as doulas, midwives, and monitrices) is rallying behind her.
As the (TW: obstetric violence) NSFW video shows, despite Turbin’s insistent pleas, her doctor cuts her vaginal opening to assist childbirth anyway, despite tons of evidence showing that natural tearing, the very thing episiotomy is intended to prevent, is much safer. A Lancet article calls the procedure, when unnecessary, female genital mutilation. While some episiotomies may be medically necessary, the World Health Organization suggests keeping rates as low as possible and midwives manage to maintain a rate of less than 3 percent in the US.
One woman shared with me the story of her episiotomy during research for this story. She was cut three times without being asked, despite the baby being fine and pushing only taking eighteen minutes until completion. She was told it was to prevent tearing, which is the common medical reason for episiotomies — but she still had a fourth-degree tear that took 240 stitches to repair, more than half of which were to close the places he cut her.
Doctors who cut are the norm, but things are changing. Midwives rarely cut and doctors who are confronted with evidence change their tactics. The woman who shared her story with me spoke to her doctor, who immediately reduced his rate of episiotomies. There is hope for the medical establishment.
During research for this story, I came across the tale of a woman in Florida who was threatened with a cesarean section “with or without her consent.” Wondering how prolific these types of doctors are, I did some extra research: I came across even more stories of forced cesareans, ones that had taken place without consent and even despite refusal.
Birthing people are far from the only people suffering at the hands of the medical establishment. Queer women, too, are given subpar treatment. Many queer women responded to my request for experiences with the medical community. Some had excellent experiences, with doctors who were culturally sensitive and responded positively to their queerness and had no issues with their experiences. Others faced discrimination.
One woman was denied an HIV test because she exclusively slept with women over a course of five years, despite having slept with men in the past and had never had an HIV test done. Another was told by a doctor that she would not provide obstetric care to a lesbian couple seeking to conceive. One was asked on a date after a melanoma screening. When asked how that affected them, they all responded negatively. One said that they had difficulty trusting doctors and another didn’t see a doctor for ten years. Others said they felt devastated, worthless, or powerless. Still, many said they later experienced great care, usually based on the doctors treating their queerness as a non-issue. Most of the respondents simply wanted to be treated like a normal patient, not an outlier or rarity.
Queer women aren’t the only people in the LGBT+ community who suffer abuse. Trans folk are routinely diminished, ignored, or treated poorly based on their status. Many stop disclosing entirely when meeting new clinicians out of fear of reprisal or simple weariness. Some have been denied treatment for major injuries, like broken bones, based on their status, while others have been denied treatment like Hormone Replacement Therapy, or HRT, by gatekeepers.
All who experienced mistreatment were different levels of devastated. Some were emotionally wrought, others physically battered, some mentally torn on how to treat themselves. The constant misgendering took its toll on a lot of the people who responded to my questionnaire. However, none of the people who responded reported the abuse. One, who had sought treatment at an LGBT+ center, felt that taking money from that sort of establishment would be “doing a disservice to [the] community.” Others didn’t have the resources.
Again, many of the exceptional experiences reported were based on being treated as normal, not an outlier or rarity. Others who experienced exceptional care were blown away by the attention paid to their pronouns. Misgendering is a form of violence that many trans people face every day. Not to mention refusal to treat serious problems — as Jay Kallio’s story and stories related to me show, a trans status can block people from receiving life-saving care.
Finally, stepping away from the LGBT+ community for a momemt, there are two more groups I’d like to talk about — fat women, and women of color. Fat women are treated poorly by doctors across the spectrum of care, from general practitioners to emergency doctors. One of the most common experiences related to me was the misdiagnosis of “fat” as the cause of illnesses, not the actual core issue. For example, one woman was experiencing excruciating pain and was told it was due to her size — despite the fact that later diagnosis tools found that she had a forty pound tumor sitting on her ovary, twisting her fallopian tube.
Others reported being suicidal and having disordered eating patterns at a very young age due to abuse from medical professionals. One common thread that emerged was that they thought this was just how it was and that they were the problem, not the clinician. This was common across the groups; a feeling that this was just how it was done and they needed to change, not the doctors.
Did you know that people of color, especially Black people, disproportionately face poor health outcomes? Not only do they have lower life expectancies, but their birth outcomes are poorer as well. The spectrum of health care – from birth to death – is failing people of color at alarming rates. Higher cancer mortality, higher rates of diseases like hypertension and diabetes, and lack of preventative health care are all symptoms of institutional racism that prevents Black people from reaching higher health outcomes. One researcher called it “weathering” – she found that the stress of daily life, from institutional poverty to more woman-centered jobs like caring for elders, prevents Black women from giving their fetuses the proper environment in which they can thrive.
Doctors who treat patients as cattle or animals are not the norm, thankfully. We hear the horror stories because they catch our attention, but the happy stories exist as well. Exceptional stories poured into my inbox during research for this article. Women treated like human beings during birth, fat women given care based on their health and not their size, and trans folk gendered correctly were all grateful and appreciative of the care they received.
Some offered advice for newbies who need health care. Many queer women posit that you should always be open about your sexual orientation when seeking a care provider. Others recommend seeking LGBT+ friendly doctors who advertise as such, either through LGBT+ community services or by word of mouth. Many trans people referenced their first doctor as the epicenter of their medical team, leading them to referrals for other culturally sensitive providers. Some of the responses from fat women were uplifting. They had learned to cherish their bodies and found providers who cared for them based on health, not size. One birthing person’s experience was that no matter what, you should do more research than you think you need to. In their words, do what you think you should do, and then do twice as much.
Find a doctor who treats you based on your needs and not as a number. This isn’t as hard as it sounds. Look for referrals from existing, excellent care providers. If you don’t already have one, seek out providers who align with your beliefs. Ask friends and family for recommendations. Ask around Facebook groups for parents, fat women, or LGBT+ people. And never settle for less than what you deserve.