It’s the spring of 2019. I’m fourteen years old and in the eighth grade. I’ve just spent the last three months writing a bill about menstrual justice for my school's mock congress. Standing on a brown makeshift podium in front of a room of mostly thirteen-year-old boys and a male teacher, I tell them all about periods. Sounds mortifying, right?

Due to my “eat the patriarchy for breakfast” approach to life, however, I feel power in seeing the squeamish looks on their faces while discussing tampons, toxic shock syndromeabortion, and how vaginas can absorb harmful chemicals from unregulated period products. This experience was the starting point of my journey with self-acceptance.

Now, flash forward to high school as I talk about estrogen, FSH (Follicle Stimulating Hormone), LH (Luteinizing Hormone) and progesterone levels with my Health 2 teacher, as we share resources on cycle syncing food and exercise, and as I buy tampons and pads in bulk at Costco while my Mexican father (raised in a culture that didn’t openly discuss anatomical topics) sheepishly tries to cover them with grocery bags. I haven’t always been so unashamed about my own anatomy—and I often still feel pressure to adhere to the taboos surrounding my body's health. During my stay at the autumn Rising Voices Fellowship August retreat, though, I encountered a book that empowered me to continue to educate myself about my body: Our Bodies, Ourselves.

I’d never read a book before Our Bodies, Ourselves that explicitly discussed and broke down myths about AFAB (assigned female at birth) bodies. Even with all of the feminist work I’ve tried to do, the book’s material felt foreign and a little uncomfortable. On the other hand, I craved this knowledge about my body that had been hidden in plain sight. I wanted to know more and to understand how this book came to be.

The idea for Our Bodies, Ourselves took root in 1969, when a group of twelve women (eight of whom were Jewish) sat down at Emmanuel College in Boston for a workshop called “Women and Their Bodies.” While discussing their experiences and frustrations, they realized how little they knew about their anatomy. Society had encouraged them to suppress their questions and emotions regarding health care. Their discussions about their personal relationships and their experiences with treatment by doctors revealed that they were not alone in their concerns. The twelve women decided to research and collect their findings to help both themselves and others. This project turned into a booklet called Women and their Bodies, later renamed Our Bodies, Ourselves to embrace the idea of people reclaiming the narrative around our own health care and bodies. This revolutionary book addressed taboo topics like abortion, pregnancy, postpartum depression, the power and role of male doctors, and the profit motive in the health care industry. Our Bodies, Ourselves came out during a time when abortion was illegal, birth control wasn’t readily available, and men had authored the small amount of accessible information about bodies assigned female at birth—it was a new, radical educational resource for people.

The initial marketing of the book happened mainly through word of mouth, and 250,000 copies were sold in New England. In 1973, the writers published an extended version of Our Bodies, Ourselves through a mainstream publisher to reach a larger audience. The women allowed this company to publish their book under the condition that they would remain in control of editorial decisions, as well as ensure a discount for non-profit health centers who purchased the book. Although the book received a lot of attention, the authors still pressed for its continued accessibility by demanding reduced costs for people with lower incomes, when they could have easily commercialized its success instead. Every few years, the writers reconstructed and republished the book to include issues relevant at the time. For example, the ninth edition, written in 2011, featured a new section on lesbian, bisexual, and asexual health.

I bet it took a lot of chutzpah to publish a book like Our Bodies, Ourselves back in the 1970s. The founding writers of Our Bodies, Ourselves understood that education (both formal and informal) can provide people with power, liberation, and autonomy. The twelve authors’ groundbreaking work allowed “ordinary” women to start the process of peacefully freeing themselves from the patriarchal culture surrounding health. As a society, we’ve come a long way since the 1970s and the origins of the women's liberation movement, but we still have a long way to go. The new generation of advocates for women’s rights and reproductive justice have a lot to learn from our foremothers—and one of these lessons is the power of education in our everyday lives.

Before I learned about my body and developed my feminist identity, I felt embarrassment surrounding my anatomy and my period. Everyone who gets a period knows the drill: there’s the expectation to hide a tampon or pad in your sleeve or pocket, to quietly ask a close friend to make sure you’re not bleeding or showing any signs of wearing a pad, and to be discreet about any symptoms of PMS. Honestly, this hide-and-seek around our bodies is exhausting. As soon as I started to inform myself about my anatomy, I felt freer and stronger, and became eager to educate others, too. (My friends sometimes get annoyed at me for how often I talk about human anatomy.)

I sometimes feel very powerless in my own life, especially during the era of COVID-19. It’s easy to feel as though I have no ability to make real change, but it’s times like these that the lessons of Our Bodies, Ourselves are most important. The everyday task of educating ourselves can lead to major societal change—the personal is indeed political, and activism on an individual scale is just as important as it is on a larger community scale. As a Jewish feminist, I have a responsibility to further the movement started by the writers of Our Bodies, Ourselves, and I hope to continue to enact change through honest, unapologetic discussions and education about our bodies.

This piece was written as part of JWA’s Rising Voices Fellowship.

HOW TO CITE THIS PAGE

Isaias-Day, Sofia. ""Our Bodies, Ourselves" in 2022." 16 March 2022. Jewish Women's Archive. (Viewed on March 28, 2022) https://jwa.org/blog/risingvoices/our-bodies-ourselves-2022.

Anne Branigin, Washington Post

December 28, 2021

People with disabilities face much higher risks during pregnancy. Researchers are only beginning to understand how.

A new study fills in gaps about the health risks pregnant women with disabilities face.

Alarming maternal mortality rates in the United States have received increasing attention from researchers, lawmakers and journalists in recent years. But while racial and ethnic disparities have been a central concern for many — Black women are three to four times as likely to die of pregnancy and birthing complications as White women — less research has focused specifically on people with disabilities.

A study published this month fills in crucial gaps about the health risks pregnant women with disabilities face, finding that they have a significantly higher risk of dying from pregnancy and childbirth than their non-disabled counterparts. They were also more likely to experience all the most severe illnesses associated with maternal mortality.

The research, published in the Journal of the American Medical Association (JAMA) Network Open, a peer-reviewed, open-access medical journal, found pregnant women with disabilities were at higher risk for a slate of pregnancy complications, including blood clotting, infection and hemorrhaging. They were also 11 times as likely to die of pregnancy or birthing as their non-disabled counterparts.

[ A nurse assumed a disabled woman wasn’t sexually active. That stereotype is dangerous, advocates say.]

Jessica Gleason, a research fellow of perinatal and pediatric epidemiology at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, led the study.

To Gleason, the findings highlight the systemic barriers women with disabilities encounter getting medical care — before they ever get pregnant.

“We can’t just put this all down to personal, individual health choices,” she said. “There are a lot of societal factors that contribute to these poor health outcomes and prenatal care.”

To learn more about the risks women with disabilities face during their pregnancies, researchers combed through a large, comprehensive data set of medical records for deliveries from 19 hospitals across the United States between January 2002 and January 2008. They compared the medical charts of 2,074 pregnant women with a documented disability (including physical, intellectual and sensory disabilities) with 221,311 pregnant women who did not.

Earlier studies found women with disabilities had higher risks for a number of pregnancy complications, including preterm birth, hypertensive disorders, gestational diabetes and Caesarean delivery, but not much was known beyond those conditions, said Gleason.

Gleason cautioned that some of the findings, such as the elevated risk of maternal mortality, could be inflated because the total number of women with disabilities in the study was relatively low. But the overall results were consistent across the board: Pregnant women with disabilities faced more severe health outcomes than their non-disabled peers, she said.

Not only were disabled women at higher risk for pregnancy and delivery-related complications — including preeclampsia (a pregnancy-related hypertensive disorder that could be fatal) and gestational diabetes — they were also more likely to have conditions that can lead to death during childbirth, such as heart attacks, infection and blood clotting.

Pregnant women with disabilities also had higher risk of obstetric intervention: Medical professionals were more likely to give patients oxytocin to stimulate labor; use forceps, vacuums and other devices to extract the fetus; or deliver babies via Caesarean sections.

According to Gleason, this data lines up with previous qualitative studies in which pregnant women with disabilities described their pregnancy and birthing experiences to researchers.

“Women with disabilities often are not allowed to attempt vaginal delivery,” noted Gleason. While the data doesn’t explicitly find a provider preference for C-sections, which generally have greater health risks than vaginal births, Gleason said medical records showed women with disabilities were more likely than those without to be given Caesareans without a clearly defined medical reason.

[ 3 women on being disabled in America, in their own words]

This combination of factors — a delivery method that is riskier, plus higher rates of severe maternal illnesses — can create a “perfect storm” that could endanger the lives of pregnant people with disabilities, Gleason said.

In an accompanying paper, Hilary Brown, an assistant professor at the University of Toronto at Scarborough, called the research an “important contribution” to existing knowledge about pregnant women with disabilities.

“Even when these complications do not result in death, they have significant implications for families,” wrote Brown, “including separation of mothers and newborns at a time that is critical for bonding and breastfeeding, as well as potential long-term negative impacts on women’s well-being.”

According to Brown, whose research focuses on maternal and child health for people with disabilities and chronic disease, “women with disabilities have long been ignored in obstetric research and clinical practice.”

“Their invisibility stems from a history of eugenic practices, including institutionalization and sterilization, imposed on people with disabilities throughout the 20th century,” Brown wrote. Today, women with disabilities are still stigmatized when it comes to their sexuality, reproductive health and desire to raise a family, she added.

Research has shown that people with disabilities get pregnant at a similar rate to those without, and that about 12 percent of women of reproductive age have some kind of disability.

But some medical providers have told researchers that they aren’t trained to treat pregnant patients who are disabled. Patients often do not know how their disability or related medications could impact their pregnancy and vice versa, and could have difficulty figuring out the cause of their symptoms. Worldwide, pregnant women with disabilities have reported feeling as though health-care workers dismissed their concerns, lacked the knowledge to help them or seemed unwilling to help.

There are other significant barriers to prenatal care for women with disabilities, Gleason noted. Their families may not support their pregnancy, and when they attempt to get care, their medical provider may not have the facilities, materials or staff to treat patients effectively. The office space or exam table may not be accessible to disabled patients, Gleason said. And some women with visual, speech and hearing impairments have reported that their providers couldn’t communicate with them effectively.

The study, which used data from before the Affordable Care Act was signed into law, also found that pregnant women with disabilities were more likely to live in poverty (other research has shown this is true of disabled people generally).

To help ensure people with disabilities have safer, healthier pregnancies, Brown called for mandatory disability training for obstetricians, midwives and other health-care professionals. More research also needs to be done on the intersection of race and disability, she said: Disability was overrepresented among people of color, who already experience stark disparities in maternal morbidity and mortality.

Gleason said additional research is needed to better understand the causes of these risks, as well as to understand how different kinds of disabilities impact maternal outcomes. But healthier pregnancies start well before a person gets pregnant, she noted.

For example, while people without disabilities may get reproductive health counseling from their primary care provider, which helps them to understand their options and individual risks, the same counseling often isn’t extended to women with disabilities, said Gleason. Some health-care workers have wrongly assumed that their disabled patients are not sexually active.

Having health problems is also “very expensive,” she added, and unless there are larger improvements to living conditions and health-care access for people with disabilities, the impact of smaller interventions could be limited.

“There’s this misconception for women entering prenatal care that this can be the time to intervene on all these health issues,” said Gleason. “We should really be focusing on women’s preconception health in general to improve pregnancy outcomes.”

Anne Branigin is a staff reporter for The Lily. Previously, she worked at the Root covering news, politics, health and social justice movements through the lens of race and gender.