Commentary Media

HIV Stigma Violently Rages On: We Must Do Better

Alison Yager

Recently, two news stories emerged that together paint a powerful picture of the dangers inherent in HIV stigma and misinformation about HIV, perpetuated in large part by the media.

Recently, two news stories emerged that together paint a powerful picture of the dangers inherent in HIV stigma and misinformation about HIV, perpetuated in large part by the media.

In San Antonio, Justin Welch was arrested on June 16 in connection with the murder of 30-year-old Elisha Henson. Welsh is alleged to have strangled Henson with an electric cord in her car shortly after she had performed oral sex on him. A witness to the events explained that Welch said he killed Henson because she was living with HIV and “was killing other people.”

This is the second widely reported instance in as many years of a woman being killed in Texas by an intimate partner because of her HIV status.

Meanwhile, in Ohio, A.F., a 23-year-old woman living with HIV, was arrested and charged with criminal HIV exposure after a recent sexual partner accused her of not disclosing her HIV status. Local television news coverage seized on the events with a salacious story that villainized A.F. and perpetuated inaccurate myths about HIV. The complainant in her case was quoted as saying (by the time of publication, the video had been removed from the local station’s site), “She might as well have put a gun to my head. … That’s pretty much what you did … shot me.”

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The words of these two men and the sentiments behind them have no basis in reality, and their panicked, enraged responses to learning the HIV status of their female partners indicate an urgent need for public education about HIV as we understand it in 2014.

Would Elisha Henson still be alive today if Justin Welch had known that there was virtually no chance of him contracting HIV from their sexual encounter? Should A.F. face 16 years in prison for a consensual sexual encounter when the odds that HIV was transmitted are similar to, or possibly far less than, the odds of getting struck by lightning in one’s lifetime?

People living in the United States need to understand that an HIV diagnosis is not a death sentence. Thanks to tremendous medical advances, a person diagnosed with HIV today can have a very near average life expectancy.  Further, the odds of a man contracting HIV from a sexual encounter with a woman are extremely low (four in 10,000 for a man engaging in vaginal sex), even lower in the case of oral sex. If the woman is on HIV medication and/or if condoms were used, the odds of transmission drop dramatically, approaching zero.

Yet these facts remain largely unknown, and as these two stories so vividly demonstrate, HIV stigma still runs unchecked, filling the educational void. Fear and scapegoating occur all too often: Eighteen percent of people report they would be uncomfortable having a colleague who is living with HIV, 29 percent of parents would be uncomfortable having a teacher with HIV, 36 percent of people would be uncomfortable having a roommate who was living with HIV, and 45 percent of people would be uncomfortable having food prepared by a person living with HIV.

The desperate need for current information about HIV and for positive messaging to counteract HIV stigma, plus the fact that six in ten Americans say that most of what they know about HIV and AIDS comes from the media, made the television news report about A.F.’s arraignment all the more deplorable. The reporter buzzes that the complainant “asked [A.F.] if she was clean before they became intimate.”

Clean?

The station’s unflinching adoption of this term blithely reinforces the notion that a person living with HIV is dirty, tainted, lesser.

It is this very devaluation of people living with HIV that was the direct cause of Elisha Henson’s death. In her honor, and in the honor of Cecily Bolden, who was killed by a lover nearly two years ago in Texas because of her HIV status, we must commit to do more and do better.

We at HIV Law Project stand behind the recommendations released last week by our allies at Positive Women’s Network-USA (emphasis added):

  • Promote comprehensive sex education to ensure that young people get complete, accurate information about HIV.
  • Support the repeal of laws that criminalize HIV status: These laws are frequently based on outdated understandings and unfounded fears of HIV transmission risks. They do not prevent HIV transmission or promote public health, but instead foster environments of hostility and brutality toward people living with HIV.
  • Pressure local health systems and law enforcement to implement recent White House recommendations to address violence and trauma in the lives of women living with HIV.
  • Based on these same federal recommendations, ensure that violence and murder based on HIV status are prosecuted as hate crimes.
  • Encourage responsible reporting by the media of Elisha Henson’s tragic murder and other cases involving people living with HIV: Coverage should be based on up-to-date knowledge of HIV transmission, must not portray people with HIV as predatory or irresponsible, and must uphold the human rights and dignity of people living with HIV.

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.

Commentary Media

David Daleiden Is Not an Investigative Reporter, Says New Legal Filing Confirming What We Knew Already

Sharona Coutts

An amicus brief filed in a federal court case provided an opportunity for journalists to state in clear terms why David Daleiden's claims to be an investigative reporter endanger the profession and its goal: to safeguard democracy by holding the powerful to account and keeping the public informed.

Last week, 18 of the nation’s preeminent journalists and journalism scholars put their names to a filing in a federal court case between the National Abortion Federation and the Center for Medical Progress, the sham nonprofit set up by anti-choice activist David Daleiden.

From the minute he released his deceptively edited videos, Daleiden has styled himself as a “citizen” or “investigative journalist.” Indeed, upon releasing the footage, Daleiden changed the stated purpose on the website of the Center for Medical Progress to be about investigative reporting instead of tissue brokering, as he had earlier claimed.

The amicus brief provided an opportunity for journalists to state in clear terms why David Daleiden’s claims to be an investigative reporter endanger the profession and its goal: to safeguard democracy by holding the powerful to account and keeping the public informed.

“By calling himself an ‘investigative journalist,’ Appellant David Daleiden does not make it so,” the journalists and academics wrote. “We believe that accepting Mr. Daleiden’s claim that he merely engaged in ‘standard undercover journalism techniques’ would be both wrong and damaging to the vital role that journalism serves in our society.”

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The signatories included former and current professors and deans from the nation’s top journalism schools, who have collectively trained hundreds, if not thousands, of reporters. They included women and men with storied careers in investigative journalism, whose credentials to speak with authority about what journalism is and how we do it cannot be doubted.

Their message is clear: David Daleiden is not an investigative journalist, and what he did is, in fact, at odds with the fundamentals of our craft.

Daleiden’s motivation for claiming the status of an investigative reporter is clear. In order to avoid financial ruin and potential jail time, he seeks to cloak himself in the protection of the First Amendment, arguing that everything he did was in his capacity as a reporter, and that the Constitution protects him as a member of the free press.

In so doing, Daleiden threatens to inflict yet more damage than his campaigns have already done, this time to the field of journalism. For if the court were to accept Daleiden’s claims, it would be endorsing his message to the public—that journalists routinely lie, break the law, get people drunk in order to elicit information, and distort quotes and video footage so dramatically that people appear to be saying the exact opposite to what they said. What hope would reporters then have of preserving the already tenuous trust that the public places in our word and our work?

This is not the first time some of the nation’s most decorated reporters have carefully reviewed Daleiden’s claims and the techniques he used to gather the footage for his videos, and concluded that he is not a reporter.

Last month, the Columbia Journalism Review published an article titled “Why the undercover Planned Parenthood videos aren’t journalism,” which was based on the results of a collaboration between the Los Angeles Times and the University of California, Berkeley’s graduate program in journalism.

That study was led by Lowell Bergman, a legendary investigative reporter whose career over the past few decades has been symbiotic with the evolution of the field. Bergman’s team and the LA Times concluded that:

Daleiden, head of the Irvine-based Center for Medical Progress, and his associates contend that they were acting as investigative journalists, seeking to expose illegal conduct. That is one of their defenses in lawsuits brought by Planned Parenthood and other groups, accusing them of fraud and invasion of privacy.

But unpublicized footage and court records show that the activists’ methods were geared more toward political provocation than journalism.

The team found what we already knew: Daleiden and his co-conspirators attempted to plant phrases in their targets’ mouths in the hopes of making them sound bad, hoping to drum up “political pressure,” according to a memo obtained by Bergman’s group that Daleiden wrote to his supporters. The activists’ use of fraud was so extensive and enthusiastic, and their deliberate splicing of videos so manipulative and dishonest, that they in no way reflected the methods or goals of real reporters.

The brief submitted in the NAF lawsuit last week echoes these findings and resoundingly makes the same point: Daleiden is not an investigative reporter. The main arguments in the brief boil down to the following, which can be understood as the pillars of investigative journalism:

  • Reporters do not falsify or distort evidence. Daleiden spliced and manipulated his videos and transcripts to give the false impression that they captured illegal conduct. A reporter’s job is to uncover and convey the truth, not to concoct false claims and peddle them as facts.
  • Reporters must use deception as a last resort, not a first resort, if they use it at all. Any use of deception—even in the service of obtaining the truth—tends to undermine the public’s trust in any of the reporter’s work. For this reason, even investigations that have uncovered serious abuses of power are often criticized, if not condemned, by the profession if they have obtained their information through deceptive means. As the brief noted, in 1978, the Chicago Sun-Times was barred as a finalist from the Pulitzer Prize because the truth it exposed was obtained through elaborate deception—Sun-Times reporters opened a bar called The Mirage for the purposes of documenting very real public graft. No one doubted that the evidence they found was both true and of great public importance. But, led by Ben Bradlee, the journalism establishment rejected the Sun-Times’ use of deception because of the long-term damage it would cause to the profession.
  • Reporters follow the law. Daleiden and his co-conspirators created fake government identification which they used to gain access into private events. No legitimate news organization would permit their reporters to take such steps.
  • Reporters do not deceive subjects into making statements to support a “predetermined theory.” Daleiden used alcohol to try to manipulate subjects into using words and phrases that he believed would sound bad on tape. Real journalists try to report against their own biases, instead of manufacturing evidence to prove their own theories.
  • Reporters seek to highlight or prevent a harm to the public. Daleiden caused great harm but exposed none.

A point that wasn’t mentioned in the legal filings is that Daleiden failed to follow a rule that student journalists learn in their first weeks of school: You must afford the subject of your reporting a full opportunity to respond to the allegations made against them. Daleiden’s videos came as a surprise attack against Planned Parenthood and NAF (but not, apparently, to certain Republican members of Congress). No reputable reporter would conduct herself in such a fashion. That is an ambush, not an article.

To many readers, these arguments may seem academic. But the reality is that real reporters take their obligations more seriously than the public might realize, to the point of risking—and sometimes losing—their lives in the service of this job, which many consider to be a calling.

One of the best investigative reporters of my generation, A.C. Thompson of ProPublica, recently reported on a group of assassins that operated on U.S. soil in the 1980s, who murdered Vietnamese-American journalists for political reasons.

To report that story, Thompson attended events held by members of the groups he believed to be linked to—or were actual parts of—these networks of killers. He did phone interviews with them. He met with them in person. And he did all of that on camera, using his real name.

Make no mistake: Thompson potentially put his life at risk to do this work, but he did it because he believed that these men had been able to murder his fellow reporters with impunity, and with possible—if tacit—support from the U.S. government.

Contrast that to Daleiden’s conduct. As noted in the legal brief:

Daleiden may think Planned Parenthood kills babies, but there was no risk whatsoever that its managers would have killed him, or even slapped him, if he approached them openly.

Daleiden’s arguments are, in some ways, the natural extension to the existential crisis that gripped journalism more than a decade ago, with the rise of blogging. What followed was a years-long debate over who could be labeled a “journalist.” The dawn of smartphones contributed to the confusion, as nearly anyone could snap a photo and publish it via Twitter.

It is therefore a tonic to read these clear defenses of the “what” and “why” of investigative journalism, and to see luminaries of the field explaining that journalism is a discipline with norms and rules. When these norms are articulated clearly, it is easy to show that Daleiden’s work does not fall within journalism’s bounds.

At times like this, the absence of David Carr’s raspy voice makes itself painfully felt. One can only imagine the field day he would have with Daleiden’s pretensions to be committing acts of journalism. Judging by this legendary exchange between Carr and Shane Smith, one of the founders of VICE news, from Page One, the 2011 documentary about the New York Times, Carr would not have minced words.

The exchange came after Smith’s self-aggrandizing assessment of his team’s work covering Liberia—where they uncovered cannibalism and a beach that locals were using as a latrine—and then mocked the New York Times’ coverage of the country.

Here’s Carr:

Just a sec, time out. Before you ever went there, we’ve had reporters there reporting on genocide after genocide. Just because you put on a fucking safari helmet and went and looked at some poop doesn’t give you the right to insult what we do.

To paraphrase: Just because Daleiden got some hidden cameras and editing software, and called himself a reporter, doesn’t mean he was doing journalism.

It’s important that both the public and the courts recognize that reality.

Disclosures: A.C. Thompson is a former colleague of the author. The author also appeared, extremely briefly, in the Page One documentary.