News Contraception

What I Want to Know Is: Where Are the Women?

Rep. Carolyn Maloney

What I want to know is, where are the women? I look at this panel, and I don't see one single individual representing the tens of millions of women across the country who want and need insurance coverage for basic preventive health care services, including family planning.

Statement by Congresswoman Carolyn Maloney at the February 16th, 2012 hearing on the contraceptive mandate, House Oversight and Government Reform Committee.

For all our coverage of the 2012 House Committee on Oversight and Government Reform Hearing, click here.

For all our coverage of the 2012 Contraceptive Mandate, click here.

Thank you, Ranking Member Cummings. I know you are a man of faith, and I know you place tremendous value on your faith and on open dialogue, so I appreciate your efforts to get a more balanced hearing today.

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What I want to know is, where are the women? I look at this panel, and I don’t see one single individual representing the tens of millions of women across the country who want and need insurance coverage for basic preventive health care services, including family planning.

Where are the women?

Mr. Chairman, I was deeply disturbed that you rejected our request to hear from a woman, a third year student at Georgetown law school named Sandra Fluke.

She hoped to tell this Committee about a classmate of hers, who was diagnosed with a syndrome that causes ovarian cysts. Her doctor prescribed the pill to treat this disease, but her student insurance didn’t cover it. Over several months she paid out hundreds of dollars in out-of-pocket costs, until she could no longer afford her medication. And she eventually ended up losing her ovary.

Your staff told us you personally rejected Ms. Fluke’s testimony, saying that, quote, “the hearing is not about reproductive rights and contraception.”

Of course this hearing is about rights—contraception and birth control. It’s about the fact that women want to have access to basic health services family planning through their health insurance plan. But some would prevent that from happening—by using lawsuits and ballot initiatives in dozens of states to roll back the fundamental rights of women to a time when the government thought what happened in the bedroom was their business and contraceptives were illegal. Tens of millions of us who are following these hearings lived through those times—and I can tell you with certainty—we will not be forced back to that dark and primitive era.

That is why – last week, the Administration announced a common-sense accommodation. Churches do not have to provide insurance coverage for contraceptives. They do not have to approve them, prescribe them, dispense them or use them. But women will have the right to access them – women who work at non-profit religious entities, like hospitals and universities, will be able to obtain coverage directly from their insurance companies—not from religious organizations—but from insurance companies.

Medical and health experts support this policy, economists support this, and a host of
Catholic groups that were conspicuously not invited today support this.
The vast majority of women—including women of faith—use some form of birth
control at some point in their lives, whether to plan the number or spacing of their children, or to address significant medical conditions.

With all due respect to the Bishops, though you have every right to follow your conscience and honor all the dictates of your faith – no one should have the power to impose their faith on others—to bend them to your will—simply because they work for you. That in itself—is an assault on the fundamental freedoms enshrined in our Constitution.

Mr. Chairman, I urge you once again, let Ms. Fluke testify. Let one woman speak on this panel—right now. She is here in the audience today—just steps away. Even if you think you will disagree with everything she says, don’t you owe it to the tens of millions of American women whose lives will be affected by what we do here today—to let just one—just one speak on their behalf? Thank you.

Culture & Conversation Maternity and Birthing

On ‘Commonsense Childbirth’: A Q&A With Midwife Jennie Joseph

Elizabeth Dawes Gay

Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Jennie Joseph’s philosophy is simple: Treat patients like the people they are. The British native has found this goes a long way when it comes to her midwifery practice and the health of Black mothers and babies.

In the United States, Black women are disproportionately affected by poor maternal and infant health outcomes. Black women are more likely to experience maternal and infant death, pregnancy-related illness, premature birth, low birth weight, and stillbirth. Beyond the data, personal accounts of Black women’s birthing experiences detail discrimination, mistreatment, and violation of basic human rights. Media like the new film, The American Dream, share the maternity experiences of Black women in their own voices.

A new generation of activists, advocates, and concerned medical professionals have mobilized across the country to improve Black maternal and infant health, including through the birth justice and reproductive justice movements.

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Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

At her clinics, which are located in central Florida, a welcoming smile and a conversation mark the start of each patient visit. Having a dialogue with patients about their unique needs, desires, and circumstances is a practice Joseph said has contributed to her patients having “chunky,” healthy, full-term babies. Dialogue and care that centers the patient costs nothing, Joseph told Rewire in an interview earlier this summer.

Joseph also offers training to midwives, doulas, community health workers, and other professionals in culturally competent, patient-centered care through her Commonsense Childbirth School of Midwifery, which launched in 2009. And in 2015, Joseph launched the National Perinatal Task Force, a network of perinatal health-care and service providers who are committed to working in underserved communities in order to transform maternal health outcomes in the United States.

Rewire spoke with Joseph about her tireless work to improve maternal and perinatal health in the Black community.

Rewire: What motivates and drives you each day?

Jennie Joseph: I moved to the United States in 1989 [from the United Kingdom], and each year it becomes more and more apparent that to address the issues I care deeply about, I have to put action behind all the talk.

I’m particularly concerned about maternal and infant morbidity and mortality that plague communities of color and specifically African Americans. Most people don’t know that three to four times as many Black women die during pregnancy and childbirth in the United States than their white counterparts.

When I arrived in the United States, I had to start a home birth practice to be able to practice at all, and it was during that time that I realized very few people of color were accessing care that way. I learned about the disparities in maternal health around the same time, and I felt compelled to do something about it.

My motivation is based on the fact that what we do [at my clinic] works so well it’s almost unconscionable not to continue doing it. I feel driven and personally responsible because I’ve figured out that there are some very simple things that anyone can do to make an impact. It’s such a win-win. Everybody wins: patients, staff, communities, health-care agencies.

There are only a few of us attacking this aggressively, with few resources and without support. I’ve experienced so much frustration, anger, and resignation about the situation because I feel like this is not something that people in the field don’t know about. I know there have been some efforts, but with little results. There are simple and cost-effective things that can be done. Even small interventions can make such a tremendous a difference, and I don’t understand why we can’t have more support and more interest in moving the needle in a more effective way.

I give up sometimes. I get so frustrated. Emotions vie for time and energy, but those very same emotions force me to keep going. I feel a constant drive to be in action and to be practical in achieving and getting results.

Rewire: In your opinion, what are some barriers to progress on maternal health and how can they be overcome?

JJ: The solutions that have been generated are the same, year in and year out, but are not really solutions. [Health-care professionals and the industry] keep pushing money into a broken system, without recognizing where there are gaps and barriers, and we keep doing the same thing.

One solution that has not worked is the approach of hiring practitioners without a thought to whether the practitioner is really a match for the community that they are looking to serve. Additionally, there is the fact that the practitioner alone is not going to be able make much difference. There has to be a concerted effort to have the entire health-care team be willing to support the work. If the front desk and access points are not in tune with why we need to address this issue in a specific way, what happens typically is that people do not necessarily feel welcomed or supported or respected.

The world’s best practitioner could be sitting down the hall, but never actually see the patient because the patient leaves before they get assistance or before they even get to make an appointment. People get tired of being looked down upon, shamed, ignored, or perhaps not treated well. And people know which hospitals and practitioners provide competent care and which practices are culturally safe.

I would like to convince people to try something different, for real. One of those things is an open-door triage at all OB-GYN facilities, similar to an emergency room, so that all patients seeking maternity care are seen for a first visit no matter what.

Another thing would be for practitioners to provide patient-centered care for all patients regardless of their ability to pay.  You don’t have to have cultural competency training, you just have to listen and believe what the patients are telling you—period.

Practitioners also have a role in dismantling the institutionalized racism that is causing such harm. You don’t have to speak a specific language to be kind. You just have to think a little bit and put yourself in that person’s shoes. You have to understand she might be in fear for her baby’s health or her own health. You can smile. You can touch respectfully. You can make eye contact. You can find a real translator. You can do things if you choose to. Or you can stay in place in a system you know is broken, doing business as usual, and continue to feel bad doing the work you once loved.

Rewire: You emphasize patient-centered care. Why aren’t other providers doing the same, and how can they be convinced to provide this type of care?

JJ: I think that is the crux of the matter: the convincing part. One, it’s a shame that I have to go around convincing anyone about the benefits of patient-centered care. And two, the typical response from medical staff is “Yeah, but the cost. It’s expensive. The bureaucracy, the system …” There is no disagreement that this should be the gold standard of care but providers say their setup doesn’t allow for it or that it really wouldn’t work. Keep in mind that patient-centered care also means equitable care—the kind of care we all want for ourselves and our families.

One of the things we do at my practice (and that providers have the most resistance to) is that we see everyone for that initial visit. We’ve created a triage entry point to medical care but also to social support, financial triage, actual emotional support, and recognition and understanding for the patient that yes, you have a problem, but we are here to work with you to solve it.

All of those things get to happen because we offer the first visit, regardless of their ability to pay. In the absence of that opportunity, the barrier to quality care itself is so detrimental: It’s literally a matter of life and death.

Rewire: How do you cover the cost of the first visit if someone cannot pay?

JJ: If we have a grant, we use those funds to help us pay our overhead. If we don’t, we wait until we have the women on Medicaid and try to do back-billing on those visits. If the patient doesn’t have Medicaid, we use the funds we earn from delivering babies of mothers who do have insurance and can pay the full price.

Rewire: You’ve talked about ensuring that expecting mothers have accessible, patient-centered maternity care. How exactly are you working to achieve that?

JJ: I want to empower community-based perinatal health workers (such as nurse practitioners) who are interested in providing care to communities in need, and encourage them to become entrepreneurial. As long as people have the credentials or license to provide prenatal, post-partum, and women’s health care and are interested in independent practice, then my vision is that they build a private practice for themselves. Based on the concept that to get real change in maternal health outcomes in the United States, women need access to specific kinds of health care—not just any old health care, but the kind that is humane, patient-centered, woman-centered, family-centered, and culturally-safe, and where providers believe that the patients matter. That kind of care will transform outcomes instantly.

I coined the phrase “Easy Access Clinics” to describe retail women’s health clinics like a CVS MinuteClinic that serve as a first entry point to care in a community, rather than in a big health-care system. At the Orlando Easy Access Clinic, women receive their first appointment regardless of their ability to pay. People find out about us via word of mouth; they know what we do before they get here.

We are at the point where even the local government agencies send patients to us. They know that even while someone’s Medicaid application is in pending status, we will still see them and start their care, as well as help them access their Medicaid benefits as part of our commitment to their overall well-being.

Others are already replicating this model across the country and we are doing research as we go along. We have created a system that becomes sustainable because of the trust and loyalty of the patients and their willingness to support us in supporting them.

Photo Credit: Filmmaker Paolo Patruno

Joseph speaking with a family at her central Florida clinic. (Credit: Filmmaker Paolo Patruno)

RewireWhat are your thoughts on the decision in Florida not to expand Medicaid at this time?

JJ: I consider health care a human right. That’s what I know. That’s how I was trained. That’s what I lived all the years I was in Europe. And to be here and see this wanton disregard for health and humanity breaks my heart.

Not expanding Medicaid has such deep repercussions on patients and providers. We hold on by a very thin thread. We can’t get our claims paid. We have all kinds of hoops and confusion. There is a lack of interest and accountability from insurance payers, and we are struggling so badly. I also have a Change.org petition right now to ask for Medicaid coverage for pregnant women.

Health care is a human right: It can’t be anything else.

Rewire: You launched the National Perinatal Task Force in 2015. What do you hope to accomplish through that effort?

JJ: The main goal of the National Perinatal Task Force is to connect perinatal service providers, lift each other up, and establish community recognition of sites committed to a certain standard of care.

The facilities of task force members are identified as Perinatal Safe Spots. A Perinatal Safe Spot could be an educational or social site, a moms’ group, a breastfeeding circle, a local doula practice, or a community center. It could be anywhere, but it has got to be in a community with what I call a “materno-toxic” area—an area where you know without any doubt that mothers are in jeopardy. It is an area where social determinants of health are affecting mom’s and baby’s chances of being strong and whole and hearty. Therein, we need to put a safe spot right in the heart of that materno-toxic area so she has a better chance for survival.

The task force is a group of maternity service providers and concerned community members willing to be a safe spot for that area. Members also recognize each other across the nation; we support each other and learn from each others’ best practices.

People who are working in their communities to improve maternal and infant health come forward all the time as they are feeling alone, quietly doing the best they can for their community, with little or nothing. Don’t be discouraged. You can get a lot done with pure willpower and determination.

RewireDo you have funding to run the National Perinatal Task Force?

JJ: Not yet. We have got the task force up and running as best we can under my nonprofit Commonsense Childbirth. I have not asked for funding or donations because I wanted to see if I could get the task force off the ground first.

There are 30 Perinatal Safe Spots across the United States that are listed on the website currently. The current goal is to house and support the supporters, recognize those people working on the ground, and share information with the public. The next step will be to strengthen the task force and bring funding for stability and growth.

RewireYou’re featured in the new film The American Dream. How did that happen and what are you planning to do next?

JJ: The Italian filmmaker Paolo Patruno got on a plane on his own dime and brought his cameras to Florida. We were planning to talk about Black midwifery. Once we started filming, women were sharing so authentically that we said this is about women’s voices being heard. I would love to tease that dialogue forward and I am planning to go to four or five cities where I can show the film and host a town hall, gathering to capture what the community has to say about maternal health. I want to hear their voices. So far, the film has been screened publicly in Oakland and Kansas City, and the full documentary is already available on YouTube.

RewireThe Black Mamas Matter Toolkit was published this past June by the Center for Reproductive Rights to support human-rights based policy advocacy on maternal health. What about the toolkit or other resources do you find helpful for thinking about solutions to poor maternal health in the Black community?

JJ: The toolkit is the most succinct and comprehensive thing I’ve seen since I’ve been doing this work. It felt like, “At last!”

One of the most exciting things for me is that the toolkit seems to have covered every angle of this problem. It tells the truth about what’s happening for Black women and actually all women everywhere as far as maternity care is concerned.

There is a need for us to recognize how the system has taken agency and power away from women and placed it in the hands of large health systems where institutionalized racism is causing much harm. The toolkit, for the first time in my opinion, really addresses all of these ills and posits some very clear thoughts and solutions around them. I think it is going to go a long way to begin the change we need to see in maternal and child health in the United States.

RewireWhat do you count as one of your success stories?

JJ: One of my earlier patients was a single mom who had a lot going on and became pregnant by accident. She was very connected to us when she came to clinic. She became so empowered and wanted a home birth. But she was anemic at the end of her pregnancy and we recommended a hospital birth. She was empowered through the birth, breastfed her baby, and started a journey toward nursing. She is now about to get her master’s degree in nursing, and she wants to come back to work with me. She’s determined to come back and serve and give back. She’s not the only one. It happens over and over again.

This interview has been edited for length and clarity.

Culture & Conversation Human Rights

Let’s Stop Conflating Self-Care and Actual Care

Katie Klabusich

It's time for a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities.

As a chronically ill, chronically poor person, I have feelings about when, why, and how the phrase “self-care” is invoked. When International Self-Care Day came to my attention, I realized that while I laud the effort to prevent some of the 16 million people the World Health Organization reports die prematurely every year from noncommunicable diseases, the American notion of self-care—ironically—needs some work.

I propose a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities. How we think about what constitutes vital versus optional care affects whether/when we do those things we should for our health and well-being. Some of what we have come to designate as self-care—getting sufficient sleep, treating chronic illness, allowing ourselves needed sick days—shouldn’t be seen as optional; our culture should prioritize these things rather than praising us when we scrape by without them.

International Self-Care Day began in China, and it has spread over the past few years to include other countries and an effort seeking official recognition at the United Nations of July 24 (get it? 7/24: 24 hours a day, 7 days a week) as an important advocacy day. The online academic journal SelfCare calls its namesake “a very broad concept” that by definition varies from person to person.

“Self-care means different things to different people: to the person with a headache it might mean a buying a tablet, but to the person with a chronic illness it can mean every element of self-management that takes place outside the doctor’s office,” according to SelfCare. “[I]n the broadest sense of the term, self-care is a philosophy that transcends national boundaries and the healthcare systems which they contain.”

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In short, self-care was never intended to be the health version of duct tape—a way to patch ourselves up when we’re in pieces from the outrageous demands of our work-centric society. It’s supposed to be part of our preventive care plan alongside working out, eating right, getting enough sleep, and/or other activities that are important for our personalized needs.

The notion of self-care has gotten a recent visibility boost as those of us who work in human rights and/or are activists encourage each other publicly to recharge. Most of the people I know who remind themselves and those in our movements to take time off do so to combat the productivity anxiety embedded in our work. We’re underpaid and overworked, but still feel guilty taking a break or, worse, spending money on ourselves when it could go to something movement- or bill-related.

The guilt is intensified by our capitalist system having infected the self-care philosophy, much as it seems to have infected everything else. Our bootstrap, do-it-yourself culture demands we work to the point of exhaustion—some of us because it’s the only way to almost make ends meet and others because putting work/career first is expected and applauded. Our previous president called it “uniquely American” that someone at his Omaha, Nebraska, event promoting “reform” of (aka cuts to) Social Security worked three jobs.

“Uniquely American, isn’t it?” he said. “I mean, that is fantastic that you’re doing that. (Applause.) Get any sleep? (Laughter.)”

The audience was applauding working hours that are disastrous for health and well-being, laughing at sleep as though our bodies don’t require it to function properly. Bush actually nailed it: Throughout our country, we hold Who Worked the Most Hours This Week competitions and attempt to one-up the people at the coffee shop, bar, gym, or book club with what we accomplished. We have reached a point where we consider getting more than five or six hours of sleep a night to be “self-care” even though it should simply be part of regular care.

Most of us know intuitively that, in general, we don’t take good enough care of ourselves on a day-to-day basis. This isn’t something that just happened; it’s a function of our work culture. Don’t let the statistic that we work on average 34.4 hours per week fool you—that includes people working part time by choice or necessity, which distorts the reality for those of us who work full time. (Full time is defined by the Internal Revenue Service as 30 or more hours per week.) Gallup’s annual Work and Education Survey conducted in 2014 found that 39 percent of us work 50 or more hours per week. Only 8 percent of us on average work less than 40 hours per week. Millennials are projected to enjoy a lifetime of multiple jobs or a full-time job with one or more side hustles via the “gig economy.”

Despite worker productivity skyrocketing during the past 40 years, we don’t work fewer hours or make more money once cost of living is factored in. As Gillian White outlined at the Atlantic last year, despite politicians and “job creators” blaming financial crises for wage stagnation, it’s more about priorities:

Though productivity (defined as the output of goods and services per hours worked) grew by about 74 percent between 1973 and 2013, compensation for workers grew at a much slower rate of only 9 percent during the same time period, according to data from the Economic Policy Institute.

It’s no wonder we don’t sleep. The Centers for Disease Control and Prevention (CDC) has been sounding the alarm for some time. The American Academy of Sleep Medicine and the Sleep Research Society recommend people between 18 and 60 years old get seven or more hours sleep each night “to promote optimal health and well-being.” The CDC website has an entire section under the heading “Insufficient Sleep Is a Public Health Problem,” outlining statistics and negative outcomes from our inability to find time to tend to this most basic need.

We also don’t get to the doctor when we should for preventive care. Roughly half of us, according to the CDC, never visit a primary care or family physician for an annual check-up. We go in when we are sick, but not to have screenings and discuss a basic wellness plan. And rarely do those of us who do go tell our doctors about all of our symptoms.

I recently had my first really wonderful check-up with a new primary care physician who made a point of asking about all the “little things” leading her to encourage me to consider further diagnosis for fibromyalgia. I started crying in her office, relieved that someone had finally listened and at the idea that my headaches, difficulty sleeping, recovering from illness, exhaustion, and pain might have an actual source.

Considering our deeply-ingrained priority problems, it’s no wonder that when I post on social media that I’ve taken a sick day—a concept I’ve struggled with after 20 years of working multiple jobs, often more than 80 hours a week trying to make ends meet—people applaud me for “doing self-care.” Calling my sick day “self-care” tells me that the commenter sees my post-traumatic stress disorder or depression as something I could work through if I so chose, amplifying the stigma I’m pushing back on by owning that a mental illness is an appropriate reason to take off work. And it’s not the commenter’s fault; the notion that working constantly is a virtue is so pervasive, it affects all of us.

Things in addition to sick days and sleep that I’ve had to learn are not engaging in self-care: going to the doctor, eating, taking my meds, going to therapy, turning off my computer after a 12-hour day, drinking enough water, writing, and traveling for work. Because it’s so important, I’m going to say it separately: Preventive health care—Pap smears, check-ups, cancer screenings, follow-ups—is not self-care. We do extras and nice things for ourselves to prevent burnout, not as bandaids to put ourselves back together when we break down. You can’t bandaid over skipping doctors appointments, not sleeping, and working your body until it’s a breath away from collapsing. If you’re already at that point, you need straight-up care.

Plenty of activities are self-care! My absolutely not comprehensive personal list includes: brunch with friends, adult coloring (especially the swear word books and glitter pens), soy wax with essential oils, painting my toenails, reading a book that’s not for review, a glass of wine with dinner, ice cream, spending time outside, last-minute dinner with my boyfriend, the puzzle app on my iPad, Netflix, participating in Caturday, and alone time.

My someday self-care wish list includes things like vacation, concerts, the theater, regular massages, visiting my nieces, decent wine, the occasional dinner out, and so very, very many books. A lot of what constitutes self-care is rather expensive (think weekly pedicures, spa days, and hobbies with gear and/or outfit requirements)—which leads to the privilege of getting to call any part of one’s routine self-care in the first place.

It would serve us well to consciously add an intersectional view to our enthusiasm for self-care when encouraging others to engage in activities that may be out of reach financially, may disregard disability, or may not be right for them for a variety of other reasons, including compounded oppression and violence, which affects women of color differently.

Over the past year I’ve noticed a spike in articles on how much of the emotional labor burden women carry—at the Toast, the Atlantic, Slate, the Guardian, and the Huffington Post. This category of labor disproportionately affects women of color. As Minaa B described at the Huffington Post last month:

I hear the term self-care a lot and often it is defined as practicing yoga, journaling, speaking positive affirmations and meditation. I agree that those are successful and inspiring forms of self-care, but what we often don’t hear people talking about is self-care at the intersection of race and trauma, social justice and most importantly, the unawareness of repressed emotional issues that make us victims of our past.

The often-quoted Audre Lorde wrote in A Burst of Light: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

While her words ring true for me, they are certainly more weighted and applicable for those who don’t share my white and cisgender privilege. As covered at Ravishly, the Feminist Wire, Blavity, the Root, and the Crunk Feminist Collective recently, self-care for Black women will always have different expressions and roots than for white women.

But as we continue to talk about self-care, we need to be clear about the difference between self-care and actual care and work to bring the necessities of life within reach for everyone. Actual care should not have to be optional. It should be a priority in our culture so that it can be a priority in all our lives.