From covering Certified Professional Midwives under Medicaid to ensuring greater access to midwives in war-torn Afghanistan, women deserve access to the care they believe is best for them and their newborns.
I received two emails in my inbox today. One was from The Big Push for Midwives, asking for help in advocating for greater access to Certified Professional Midwifery (CPM) nationally. The group is basically petitioning Congress to add CPMs to the Medicaid provider list in order to make midwifery an actual option for more women in the United States. Why?
I’ve written extensively about all of the reasons why access to out-of-hospital birth is critical for women in the United States but if you want the quick run-down, check out this synopsis from The Big Push (and sign the petition if you’re so inclined, while you’re there!).
Why is this an uphill battle? Part of the problem is that professional organizations like the AMA and ACOG, while quite supportive of safe abortion care, are not keen on expanding childbirth options to include out-of-hospital settings and use of CPMs, for healthy, low-risk pregnant women. As well, in this country, we’re still enmeshed in seeing childbirth as a medical condition – a condition that must be treated clinically by a physician – regardless of whether or not there are any "medical conditions" present. Culturally we have strayed (if we were ever there) from women experiencing childbirth as normal and healthy, providing opportunities to bond with other women, and receiving support from a midwife and a community of other women.
This is not to say that CPMs do not care for the health of pregnant and birthing women but more that the medical establishment has succeeded in over-medicalizing birth to the point where, ironically, women’s health and lives (as well as the health and lives of the fetuses’ and newborns’) are placed at greater risk through unnecessary interventions. Jennifer Block has written an entire book on the subject!
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Please don’t misunderstand. I’m not saying that prenatal care and childbirth care is not critical. As I’ve referenced in the past, the United States’ maternal mortality rates are dismal for an industrialized nation. African American women are four times as likely to die during childbirth as white women are, in this country. This dire situation is precisely why we need to expand options to a range of care for all women – not limit them.
So, I know you’re probably wondering at this point what that other email was? The New York Times has an excellent article on the critical role midwives can play in rebuilding Afghanistan, specifically addressing maternal health. The country is second only to Sierra Leone, in the entire world, in its numbers of women dying directly as a result of pregnancy and childbirth.
Amid war, after suffering for years under the Taliban, Afghan women are truly in trouble:
The main causes of these deaths are hemorrhage and obstructed labor, which can be fatal if a woman cannot obtain a Caesarean section.
Even if the mother survives, obstructed labor without a Caesarean
usually kills the baby. Most of the maternal deaths — 78 percent,
according to the Lancet report — could be prevented. [emphasis mine].
But there is one woman under whose leadership Afghanistan is beginning to rebuild its midwifery battalion, literally saving women’s lives.
Her name is Pashtoon Azfar and she works for Johns Hopkins University but also heads up the Afghan Midwives Association. Her mission? It is to remedy the Afghan women’s death rate from pregnancy and childbirth by training and disbursing the next generation of midwives in Afghanistan.
The article notes that there is a long way to go. Apparently 80% of women in Afghanistan birth alone or without the help of a skilled birth attendant. And cultural issues plague Afghan women as well:
Afghanistan’s problems mirror those of many other poor countries:
shortages of personnel, supplies and transportation to clinics or hospitals,
especially in remote regions and mountainous areas that are snowbound
half the year. The deeper problems are cultural, rooted in the low
status of women and the misperception that deaths in childbirth are
inevitable — part of the natural order, women’s lot in life.
As we all know, Afghanistan wasn’t always mired in these battles. Before the Taliban women enjoyed equality similar to that of women in the West. After years of war, however, it is certainly women and girls who have suffered unimaginably, without choice or options, surrendering their bodies and babies to a militant power.
But Azfar calls the midwives she trains "champions" and has great faith that they will help turn things around.
The link between these two stories? It’s not just that midwives can provide critical assistance, support and care to pregnant and laboring women around the world. It’s that women around the world must demand the right to life – the right not to "surrender our bodies and babies" to powers that tell us we are not worthy of care; and that whether we’re talking about safe abortion care, access to contraception, HIV protection or bringing new life into this world safely, we’re talking about reproductive and sexual health and rights.
Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”
Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”
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Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.
All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.
Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”
For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.
“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”
“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”
Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.
Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.
“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”
Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”
The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.
In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.
Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.
“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”
Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.
LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
“Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”
In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.
“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”
Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.
“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.
While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.
“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”
The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.
Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.
Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.
“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”
Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.
“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”
According to the new law, the jail should have been prohibited from using any type of restraint on Gamble during labor, and using of leg and waist restraints on her during and immediately after her pregnancy. It also guaranteed her minimum standards of pregnancy care and required—as with everyone incarcerated while in their second or third trimesters—that she be transported in the jail’s vehicles with seat belts whenever she was taken to court, medical appointments, or anywhere outside the jail.
But that wasn’t the case for Gamble. Instead, she says, when it came time for her to give birth, she was left to labor in a cell for eight hours before finally being handcuffed, placed in the back of a police cruiser without a seatbelt, and driven to a hospital, where she was shackled to the bed with a leg iron after delivering.
In addition to analyzing policies, they spoke with women who were pregnant while in custody and learned that women continue to be handcuffed during labor, restrained to the bed postpartum, and placed in full restraints—including leg irons and waist chains—after giving birth.
“The promise to respect the human rights of pregnant women in prison and jail has been broken,” the report’s authors concluded.
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“The Massachusetts law is part of a national trend and is one of the most comprehensive in protecting pregnant and postpartum women from the risks of restraints,” said Roth in an interview with Rewire. “However, like most other states, the Massachusetts law doesn’t have any oversight built in. This report clearly shows the need for staff training and enforcement so that women who are incarcerated will be treated the way the legislature intended.”
Gamble learned all of this firsthand. In the month before her arrest, Gamble had undergone a cervical cerclage, in which a doctor temporarily stitches up the cervix to prevent premature labor. She had weekly visits to a gynecologist to monitor the development of her fetus. The cerclage was scheduled to be removed at 37 weeks. But then she was arrested and sent to jail.
Gamble told jail medical staff that hers was a high-risk pregnancy, that she had had a cerclage, and that her first child had been born six weeks prematurely. Still, she says she waited two months before seeing an obstetrician.
As her due date drew closer, the doctor, concerned about the lack of amniotic fluid, scheduled Gamble for an induction on Feb. 19, 2015. But, she says, jail staff cancelled her induction without telling her why.
That same evening, around 5 p.m., Gamble went into labor. Jail staff took her to the medical unit. There, according to Gamble, the jail’s nurses took her blood pressure and did a quick exam, but did not send her to the hospital. “They [the nurses] thought I was ‘acting up’ because my induction was canceled,” she told Rewire.
She was placed in a see-through cell where, as the hours progressed, her labor pains grew worse. “I kept calling to get the [correctional officers] to get the nurse,” Gamble recalled. By the time a nurse came, Gamble was bleeding. “The nurse made me pull down my pants to show her the blood—in front of a male [correctional officer]!” Gamble stated. Still, she says, no one called for an ambulance or made arrangements to drive her to the hospital.
At 1:45 in the morning, over eight hours after she first went into labor, the jail’s captain learned that Gamble was in labor. “[He] must have heard all the commotion, and he called to find out what was going on,” she said. He ordered his staff to call an ambulance and bring her to the hospital.
But instead of calling an ambulance, Gamble says jail staff handcuffed her, placed her in the back of a police cruiser without a seatbelt—in violation of the law—and drove her to Charlton Memorial Hospital. “My body was already starting to push the baby out,” she said. She recalled that the officers driving the car worried that they would have to pull over and she would give birth by the side of the road.
Gamble made it to the hospital, but just barely. Nine minutes after arriving, she gave birth: “I didn’t even make it to Labor and Delivery,” she remembered.
But her ordeal wasn’t over. Gamble’s mother, who had contacted Prisoners’ Legal Services and Prison Birth Project weeks earlier, knew that the law prohibited postpartum restraints. So did Gamble, who had received a packet in jail outlining the law and her rights from Prisoners’ Legal Services. When an officer approached her bed with a leg iron and chain, she told him that, by law, she should not be restrained and asked him to call the jail to confirm. He called, then told her that she was indeed supposed to be shackled. Gamble says she spent the night with her left leg shackled to the bed.
When the female officer working the morning shift arrived, she was outraged. “Why is she shackled to the bed?” Gamble recalled the officer demanding. “Every day in roll call they go over the fact that a pregnant woman is not to be shackled to anything after having a baby.” The officer removed the restraint, allowing Gamble to move around.
According to advocates, it’s not unusual for staff at the same jail to have different understandings of the law. For Gamble, that meant that when the shift changed, so did her ability to move. When the morning shift was over, she says, the next officer once again shackled Gamble’s leg to the bed. “I was so tired, I just went along with it,” Gamble recounted.
Two days after she had given birth, it was time for Gamble to return to the jail. Despite Massachusetts’ prohibition on leg and waist restraints for women postpartum, Gamble says she was fully shackled. That meant handcuffs around her wrists, leg irons around her ankles, a chain around her waist,g and a black box that pulled her handcuffs tightly to the waist chain. That was how she endured the 20-minute drive back to the jail.
Gamble’s jail records do not discuss restraints. According to Petit, who reviewed the records, that’s not unusual. “Because correctional officers don’t see it as out of the ordinary to [shackle], they do not record it,” she explained. “It’s not so much a misapplication of the extraordinary circumstances requirement as failure to apply it at all, whether because they don’t know or they intentionally ignore it.”
While Bristol County Sheriff’s Office Women’s Center’s policies ban shackling during labor, they currently do not prohibit restraints during postpartum recovery in the hospital or on the drive back to the jail. They also do not ban leg and waist restraints during pregnancy. Jonathan Darling, the public information officer for the Bristol County Sheriff’s Office, told Rewire that the jail is currently reviewing and updating policies to reflect the 2014 law. Meanwhile, administrators provide updates and new information about policy and law changes at its daily roll call. For staff not present during roll call, the jail makes these updates, including hospital details, available on its east post. (Roll call announcements are not available to the public.)
“Part of the problem is the difference in interpretation between us and the jurisdictions, particularly in postpartum coverage,” explained Petit to Rewire. Massachusetts has 14 county jails, but only four (and the state prison at Framingham) hold women awaiting trial. As Breaking Promises noted: “Whether or not counties incarcerate women in their jails, every county sheriff is, at minimum, responsible for driving women who were arrested in their county to court and medical appointments. Because of this responsibility, they are all required to have a written policy that spells out how employees should comply with the 2014 law’s restrictions on the use of restraints.”
Four jurisdictions, including the state Department of Correction, have policies that expressly prohibit leg and waist restraints during the postpartum period, but limit that postpartum period to the time before a woman is taken from the hospital back to the jail or prison, rather than the medical standard of six weeks following birth. Jails in 11 other counties, however, have written policies that violate the prohibition on leg and waist shackles during pregnancy, and the postpartum prohibition on restraints when being driven back to the jail or prison.
Even institutions with policies that correctly reflected the law in this regard sometimes failed to follow them: Advocates found that in some counties, women reported being restrained to the bed after giving birth in conflict with the jail’s own policies.
“When the nurse left, the officer stood up and said that since I was not confirmed to be in ‘active labor,’ she would need to restrain me and that she was sorry, but those were the rules,” one woman reported, even though the law prohibits restraining women in any stage of labor.
But shackling pregnant women during and after labor is only one part of the law that falls short. The law requires that pregnant women be provided with regular prenatal and postpartum medical care, including periodic monitoring and evaluation; a diet with the nutrients necessary to maintain a healthy pregnancy; written information about prenatal nutrition; appropriate clothing; and a postpartum screening for depression. Long waits before transporting women in labor to the hospital are another recurring complaint. So are routinely being given meals without fruits and vegetables, not receiving a postpartum obstetrician visit, and waiting long stretches for postpartum care.
That was also the case with Gamble. It was the middle of the night one week after her son’s birth when Gamble felt as if a rock was coming through her brain. That was all she remembered. One hour later, she woke to find herself back at the hospital, this time in the Critical Care Unit, where staff told her she had suffered a seizure. She later learned that her cellmate, a certified nursing assistant, immediately got help when Gamble’s seizure began. (The cell doors at the jail are not locked.)
Hospital staff told her that she had preeclampsia, a pregnancy complication characterized by high blood pressure. Postpartum preeclampsia is rare, but can occur when a woman has high blood pressure and excess protein in her urine soon after childbirth. She was prescribed medications for preeclampsia; she never had another seizure, but continued to suffer multiple headaches each day.
Dr. Carolyn Sufrin is an assistant professor of gynecology and obstetrics at Johns Hopkins Medicine. She has also provided pregnancy-related care for women at the San Francisco County Jail. “Preeclampsia is a leading cause of maternal mortality,” she told Rewire. Delayed preeclampsia, or postpartum preeclampsia, which develops within one to two weeks after labor and delivery, is a very rare condition. The patient suffering seizures as a result of the postpartum preeclampsia is even more rare.
Postpartum preeclampsia not only needs to be treated immediately, Sufrin said, but follow-up care within a week at most is urgent. If no follow-up is provided, the patient risks having uncontrolled high blood pressure, stroke, and heart failure. Another risk, though much rarer, is the development of abnormal kidney functions.
While Sufrin has never had to treat postpartum preeclampsia in a jail setting, she stated that “the protocol if someone needs obstetrical follow-up, is to give them that follow-up. Follow through. Have continuity with the hospital. Follow their instructions.”
But that didn’t happen for Gamble, who was scheduled for a two-week follow-up visit. She says she was not brought to that appointment. It was only two months later that she finally saw a doctor, shortly before she was paroled.
As they gathered stories like Gamble’s and information for their report, advocates with the Prison Birth Project and Prisoners’ Legal Services of Massachusetts met with Rep. Kay Khan (D-Newton), to bring her attention to the lack of compliance by both county jails and the state prison system. In June 2015, Khan introduced An Act to Ensure Compliance With the Anti-Shackling Law for Pregnant Incarcerated Women (Bill H 3679) to address the concerns raised by both organizations.
The act defines the postpartum period in which a woman cannot be restrained as six weeks. It also requires annual staff trainings about the law and that, if restraints are used, that the jail or prison administration report it to the Secretary of Public Safety and Security within 48 hours. To monitor compliance, the act also includes the requirement that an annual report about all use of restraints be made to the legislature; the report will be public record. Like other statutes and bills across the country, the act does not have specific penalties for noncompliance.
In December 2015, Gamble’s son was 9 months old and Gamble had been out of jail for several months. Nonetheless, both Gamble and her mother drove to Boston to testify at a Public Safety Committee hearing, urging them to pass the bill. “I am angered, appalled, and saddened that they shackled her,” Gamble’s mother told legislators. “What my daughter faced is cruel and unusual punishment. It endangered my daughter’s life, as well as her baby.”
Though she has left the jail behind, Gamble wants to ensure that the law is followed. “Because of the pain I went through, I don’t ever want anyone to go through what I did,” she explained to Rewire. “Even though you’re in jail and you’re being punished, you still have rights. You’re a human being.”