Investigative journalist – Storyteller – Performer

The First to Go: Disabled People Fight for Visibility in the Physician-Assisted-Death Debate

Posted on November 25, 2014

John Kelly has been told he’d be better off dead.

Not because he wanted to die, or even because he was suffering, but because people around him thought that if they were in his shoes — in his wheelchair, that is — they wouldn’t want to live. Kelly was able-bodied until he turned 25. Now, he is a professional activist for disability causes, and in particular, in opposing physician-assisted death.

Since Californian and cancer patient Brittany Maynard became famous this year for moving to Oregon to take advantage of their “death with dignity” law, the concept of taking lethal medicines in order to end one’s life has become an even more active debate. Gallup reports that between 58 and 69% of Americans support the concept, with the large gap accounting for difference in wording. That poll was last completed before the Maynard case, but an NPR poll held this October found about the same. Judging by opinion pieces and TV talking heads, the support is only growing. Yet, as Kelly would point out, the wishes of the many cannot outweigh the safety of the few, and many people with disabilities say that if “death with dignity” becomes legal, they will be the first to be pushed to the front of the line.

Even that phrase, “death with dignity,” is up for debate. Like “pro-choice” and “pro-life,” the term brings with it the baggage and bias of one side of the discussion. Kelly prefers the straight-forward “assisted suicide,” which sounded relatively neutral to this reporter. Not so. When I spoke to Kathryn Tucker, the executive director of the Disability Rights Legal Center (DRLC) at Loyola Law School, she corrected me. Unlike suicide, she pointed out, when someone chooses to end their life with the aid of a doctor, it’s typically because they are already dying, and simply want to do it as painlessly and easily as possible. “Euthanasia” is also a non-starter, which Tucker defined as the doctor ending the patient’s life without his or her explicit consent (dictionary definitions vary, but her point, of course, is that the term is loaded).

But for most within the disability rights movement, a loaded term is exactly what is needed. In this case, they might say, loaded means accurate. Most disability rights groups oppose legalizing physician-assisted death, arguing that when it is legal, people with disabilities are pressured by their doctors, communities, and even families, to end their lives. And in a society that doesn’t provide a full range of options for disabled people, physician-assisted death can be an easy out for the able-bodied family member. For the disabled person, they say, it’s a deadly nightmare, as he or she is made to feel like a living burden.

Even the National Council on Disability, the federal agency which analyzes national policies’ impact on people with disabilities, staunchly opposes legalization. According to Not Dead Yet, a disability organization of which Kelly is a regional director, the only disability organization that officially supported legalization was the now-defunct Autonomy Inc. The Not Dead Yet website says that Autonomy was “formed as a chapter of Compassion in Dying,” suggesting that cynical politics are at play. DRLC seems not far behind in okaying assisted death, having named Tucker their executive director in September after she completed two decades at the pro-legalizing group, Compassion & Choices. Even within Tucker’s announcement letter, DRLC celebrates that work, saying she “worked to improve patient rights and choice at the end of life.”

That raised an eyebrow with disability activists. After Tucker was hired, at least 22 disability organizations signed a letter to DRLC, asking to “engage in dialogue…about the serious concerns we have over Ms. Tucker’s work in her previous position at Compassion & Choices,” and that her previous work “has placed members of the disability community in significant danger.”

But Tucker says she simply wants everyone to have the right to end life as they see fit, a right that she says we already partially extend when we allow end-of-life decisions, like refusing to resuscitate.

“We empower people to make those decisions, because we’re a free country. We respect individual autonomy, and autonomy over the body, and medical decision-making,” said Tucker. “So those choices are really no different than the choice of a patient who says ‘I’m trapped in a dying process that I find unbearable… And I don’t want to endure this last bit of horrific suffering.”

It’s hard to imagine hearing such a plea and not feeling moved. For anyone who has seen a person tumble toward death with the predictable unpredictability of a failing body, the chance to stop that suffering before it starts is a promising, if not miraculous, one. But while suffering might be the most compelling reason to legalize, it is not the reason most patients ask for lethal prescriptions. A study released in 2013 showed that for the 114 patients who went to a cancer care center in Seattle and asked about information on the process, the main concerns had little to do with physical suffering.

In the study authors’ own words:

The reasons for participation in our program reflect concern about autonomy, dignity, and functional status rather than disease-related symptoms or depression.

Those words may sting for disabled readers, many of whom have experienced derision and prejudice for having different “functional statuses” for their entire lives. In fact, it’s this very concern that drives their opposition to “death with dignity” laws. When able-bodied people become disabled, they may express the wish to die, but perhaps only because they have no concept of a happy, fulfilled life with a disability. And, the thinking goes, they have no concept of this because disabled people in America are either pitied or invisible. And so, when a recently-disabled person chooses physician-assisted death, it sends a lot of messages: “I never saw you,” “my life isn’t worth living,” and “neither is yours.”

Europeans are also seeking physician-assisted suicide for reasons unrelated to physical suffering. In Switzerland, a 2008 study on two prominent organizations that provide such services found that between 22% and 34% of those who took lethal medications did not have a diagnosis of a fatal disease. The study authors explain that “weariness of life, rather than a fatal or hopeless medical condition, may be a more common reason for older [clients] to commit suicide.”

When Kelly and I spoke on Skype, his assistant adjusted his microphone and helped him get the computer program running. Kelly was reclined on a bed, wearing his favorite pink “Not Dead Yet” shirt, as he had promised when we set up the interview. He was vivacious and bright, and if I had closed my eyes, I would have had no idea he had a disability.

But that’s exactly what he would never have me do: close my eyes and pretend that his disability isn’t real.

When Tucker and I were closing our conversation, I confessed to her that I one day would like to have the option to take my final weeks or months into my own hands. I asked her if she thinks that will be a possibility in fifty years, when I am stepping into my eighties. She thought so. Support for “death with dignity” laws are only increasing in the polls, she pointed out. By the time 2064 rolls around, we will also have about 10 billion people on the planet. It’s hard to imagine that such laws won’t become mainstream, even if only as a practical matter.

I asked Kelly if the only answer is to continue to criminalize physician-assisted death. Was there any chance that policy could be adjusted so that all Americans could choose to end their own lives as they saw fit, and people with disabilities would not be put at risk?

“With the current prohibition in most states, there’s at least a chance of an investigation,” he said. “Once it’s legalized, there’s no chance.” In other words, maybe when I am nearing the end of my life, I can find some help through creative means. But no matter how creative a person with a disability gets, she will always be at risk.

“Innocent people will inevitably lose their lives,” he said.

And according to Tucker and the more than 50% of Americans who support the practice, the more common tragedy is when innocent people are forced to keep them.

This story was originally published on NeonTommy.

Will this new study help end schizophrenia?

Posted on November 25, 2014

In Elyn’s junior year of high school, houses started talking to her.

You are special. You are especially bad. Look closely and ye shall find. There are many things you must see. See. See.

The houses weren’t speaking — not in the usual, audible sense— but nonetheless, they were transmitting their messages to her, through her own mind.

“I instinctively knew they were not my ideas,” she explains in her autobiography,  The Center Cannot Hold: My Journey Through Madness, “They belonged to the houses, and the houses had put them in my head.”

Elyn has schizophrenia. She’s not “a schizophrenic.” This term, she holds, can be dismissive and pigeon-holing. Rather, she is a person with schizophrenia, and she has lived with the accompanying delusions, hallucinations and chaotic thinking virtually all her life.  But Elyn didn’t grow up to be the stereotypical person with schizophrenia; thanks to modern medicine, she grew up to be Elyn Sacks, PhD, a professor of law at USC, and a MacArthur Fellow. And that line about not being “a schizophrenic”? She delivered it at TEDGlobal2012. Her talk has been viewed over 2 million times.

Professor Saks is just one of the success stories in the medical treatment of schizophrenia. But there are about 3 million others who live with schizophrenia in the United States alone, and 24 million worldwide. So yesterday’s announcement that schizophrenia is likely not one, but as many as eight disorders, could impact treatment for almost as many Americans as there are people in Los Angeles.

The research, released by Washington University School of Medicine in St. Louis, was published in The American Journal of Psychiatry and immediately heralded as one of the greatest breakthroughs in schizophrenia history. But USC’s Dr. Carlos N. Pato, who co-authored the study, warns that such thinking is an overreaction, and even dangerous. “It’s very important not to assume that these [findings] present the answer,” he told me. “The reality is that they’re each different windows into whats happening and help guide us into developing new treatments.” Pato’s caution was echoed by other experts who declined to comment in this article because of some controversy surrounding the finding.

Still, most are hopeful. Dr. Stephen Marder of UCLA has spent virtually his entire career studying schizophrenia, its causes, and how to treat it. He calls the research “very promising.” Marder doesn’t just work in the lab. He also counsels people who have schizophrenia, or who have a loved one who deals with the disease. He says people don’t usually come out about having schizophrenia because of fear of how others will judge them. ”There is a huge stigma,” he said. “It has the unfortunate effect that many people with the illness really don’t talk about it openly.” Saks, he notes, “is one extraordinary exception.” Together with Saks and others, Dr. Marder has been working on research of twenty people with schizophrenia who buck expectations of people with mental illness; they hold down jobs, have college degrees, and even, in one case, run a nonprofit. Saks recently wrote an Opinion piece for the New York Times, in which she explained that work, in fact, helps many people control their schizophrenia symptoms. “Work has been an important part of who I am,” one person in the group relayed to Saks. “When you become useful to an organization and feel respected in that organization, there’s a certain value in belonging there.”

But these people are, by and large, the exception. The U.S. homeless population is disproportionately schizophrenic, and people who don’t treat their schizophrenia with medication are 37 times more likely to die from suicide. It’s statistics like these that drive so much urgent research into schizophrenia’s causes and potential treatments.

The study released yesterday, which examined more than 4,000 people with schizophrenia (and compared them to people without it), identified gene clusters that were common among individuals with schizophrenia symptoms. Sometimes, if a person had a cluster, it was nearly certain that they would have the associated symptoms (certain clusters carried a likelihood of 70 to 100 percent). In all, they found 42 clusters that spelled a high chance of schizophrenic symptoms, and at least eight distinct disorders under the umbrella we normally call “schizophrenia.” Pato says it is likely even more than eight, with many subtypes for each syndrome.

The greatest part of this news, for researchers and patients alike, is its promise for future treatments. By identifying the clusters at play, future treatments can be much more targeted and specific.  Inherited genes probably play the biggest role, Marder says, but he and Pato both agree that infections could also be part of the puzzle. For example, Toxoplasma gondii, a parasite best known for living in cat feces, has been pointed to as one potential culprit. But many uncertainties remain.

“What we’ve done here, after a decade of frustration in the field of psychiatric genetics, is identify the way genes interact with each other, how the [genetic] ‘orchestra’ is either harmonious and leads to health, or disorganized in ways that lead to distinct classes of schizophrenia,” senior researcher Dr. C. Robert Cloninger said.

Still, the work continues.

“I believe this is scientifically exciting,” said Pato. “But for me, it is a new question. Is what we found in this data going to prove to be true?”

That’s the big question. And until new treatment emerges, 3 million Americans will be waiting on the answer.

This story was originally published by NeonTommy.

The Leafletter

Posted on November 25, 2014

Running time 2:21

The Leafletter / Running time 2:21

If you live in a major city, you’ve probably run into animal rights activists somewhere. Maybe they’re protesting outside a fur store, or handing out leaflets, asking you to go vegetarian. And if you’re like a lot of people, you walked right by that leaflet, and tried not to make eye contact. But I met up with Eric Deardorff, an animal rights activist who’s so full of energy, it’s hard to say no to him. And I asked him how he got to be so pumped up to help animals.

This piece was originally aired on Annenberg Radio News.

Punch Lines and Victims: The Media’s Portrayal of Transgender People

Posted on November 25, 2014

Alice Rehfeldt was 19 and in college when she first saw someone like her. It was 2003, and blogging was booming. Out of this global network of writers came subcultures that would never have met otherwise, and among the voices, Rehfeldt found transgender writers. They were people who either identified as a gender other than the one on their birth certificate, or didn’t identify as male nor female. Alice had been considered anatomically male by default, the way most of us are pegged by gender at birth, but she had always known that something was “wrong.”

In the early 2000s, the term “transgender” was barely a T on the end of LGBT. When transgender people were mentioned, they were nearly always the butt of a joke. And as Rehfeldt puts it, a transgender person had to either stay stuck in the gender presentation their parents and culture had given them, or surgically transition and then “go stealth”; that is, find a new town, new friends, and a new job, as if part of the witness protection program.

Rehfeldt is one of the estimated 0.3% of adult Americans who are transgender — nearly 700,000 Americans, according to research released by the University of California Los Angeles. As of the most recent US Census, transgender individuals are not even acknowledged directly in the population index, leaving estimates to academics and advocacy groups. For Rehfeldt and the hundreds of thousands of people like her, the media is not a mirror, but a glimpse into a world in which she doesn’t belong. And historically, that media has been distinctly anti-trans, much as gays were once considered a fair target for journalists and “edgy” comedians. But for good or bad, as Alice was becoming an adult, a notable shift was taking place in the way trans issues were covered.

In 1999, Boys Don’t Cry had won Hilary Swank a Best Actress Oscar for her true story portrayal of a young transgender man who was murdered in his tiny town. As the film was released, the infamous murder of Matthew Shepherd brought even more attention to violence against anyone who didn’t fit into a heteronormative category. And this was the climate in which Alice was learning that she was Alice; a young woman without a tribe, or at best, a tribe of murder victims and punch lines. But at least in the victim tales, the real stories were being told. People were finally starting to care about the violence and prejudice leveled at trans individuals. It hadn’t always been that way.

When Christine Jorgensen first crashed onto the scene in 1951, much of America hadn’t heard of transgender people. Ms. Jorgensen had served in World War II and grown up in the Bronx, but quickly after finishing her service in the Army, she surgically transitioned, and emerged onto the United States media scene, a “blonde bombshell” by many accounts. Susan O’Neal Stryker, a gender studies scholar and journalist at the University of Arizona, told me the media attention may have been as much about post-war science mania as it was about her traditionally drop-dead good looks.

“Being a beautiful blonde bombshell had something to do with [the attention],” Stryker told me via email. “Also, at a deeper level, I think it had to do with the global power of the U.S. post-World War II. Jorgensen’s transsexuality spectacularized a particularly US-centric way of organizing identity.” In other words, even though Jorgensen was upsetting our understanding of man and woman, she was also reinstating it; by choosing the other side, she was still choosing a side. It would be many years before transexuals who belong to neither gender would be embraced as another part of the spectrum.

Stryker, who is also transgender, practically wrote the book on media portrayal of trans individuals. She even penned the foreword to Jorgensen’s own book,Christine Jorgensen: A Personal Autobiography when the book was re-released posthumously. It reads more like a plodding journal than an inspired personal tale, and Stryker pulls no punches in the foreword, noting “the book sometimes makes for admittedly dull reading,” but that this was necessary, at a time when trans people had to prove their own normalcy. Being boring was, in its own way, a way of proving one’s own humanity.

Jorgensen herself had been influenced by the media; reading about hormone experiments on animals had inspired her to administer estrogen to herself, then finish the transition process with professional help in Denmark. When she returned to the U.S. in 1953, a “new woman,” she recalls that over 300 reporters were there to take her picture. But still, she was seen as somewhere between a science experiment and an outcast. While no one could look away, there wasn’t always admiration in their eyes. And that attitude continued for several decades.

Like the gay rights movement, the trans awareness movement has had to lead the press by the hand, bending over backwards to allow for well-meaning reporters who don’t know (or don’t bother to look up) how to speak about transgender people and their lives. In 1980, recalls Stryker, she was just beginning to become aware of the problem. In those few short decades between then and now, transgender men and women went “from being treated like a mentally ill freak to it being more like being gay; some people are trans, some aren’t, and only the bigots care one way or another.”

A group in the United Kingdom called All About Trans is leading the fight in helping the media make that shift. All About Trans is a project devoted entirely to helping media professionals understand and talk about trans people accurately and respectfully. I spoke to Jonathan Tebble, a spokesperson for the organization, about the major challenges reporters face.

“Language is a huge issue still,” he said, noting that the phrase “sex change” is still thrown about as if sex is, in fact, something a person can change (the preferred language is “transition” or “surgical transition” if appropriate). Likewise, trans activists have struggled to get non-trans people to adopt the prefix “cis” (meaning, non-transgender), perhaps because of an internalized sense of normalness. “If I’m the standard,” the thinking goes, “why do I need a name for it?” “Being born in the wrong body,” Trebble said, is another trope that needs to die. And then there’s the big issue: being trans in the media means being forced to be a broken record.

“There’s still an element of sensationalism in [these] stories… There’s a need for… people to talk about being trans to ensure that stories in the mainstream press are out there, but rarely are there stories about trans people to do with their lives outside of that,” Tebble said. Indeed, that’s something every person to whom I spoke emphasized. When I asked Stryker what changes she would like to see in fictional media like TV and movies, she said “I’d love to a see a story that didn’t revolve around transition or surgery.”

Rehfeldt was also not ready to celebrate the new emergence of transgender characters in TV and film. “I’m personally not super enthusiastic about a lot of the portrayals that we’re seeing, even though I’m happy they exist,” she said, a little exasperation in her voice. “It seems like now we’ve entered the phase where the only trans story you can tell, in addition to one about violence, is one where the trans person is coming out, and they’re in the midst of transition. Thatis the finite point, and then after you’ve transitioned, you continue living your life.” Like Ellen’s “coming out” episode, perhaps all these movies and shows about transition will one day be passé.

Still, having positive stories at all is change from when Rehfeldt was 19 and first identifying as transgender. “It definitely seemed like all of the portrayals in most media [during her adolescence] were surrounding violence. It was either that or punchlines. Like, the guy picks up the woman at the bar, and then in the next scene, she’s standing next to him at the urinal.”

It’s no longer acceptable in most quarters to make those jokes, though a few famous exceptions exist, like RuPaul, who staunchly defended his usage of the words “tranny” and “she-male” against objections. Rehfeldt noted that RuPaul, though gay, is a cis man, and gay rights and trans rights have often been lumped together, sometimes dischordantly.

As Stryker notes, now that same-sex marriage is practically the law of the land in the U.S., trans rights “is increasingly being positioned as the ‘next big thing’ in minority rights.” Good news, right? Stryker is suspicious.

“I really think it means more access to ‘normalcy’ for fewer privileged trans people and doesn’t really address the lives of most trans people, particularly those whose lives are most precarious,” she said.

For every transgender celebrity (and there are still precious few), there will be countless transgender people living in fear of violence, or unable to express themselves even to their families. And perhaps if the media made a more concerted effort to represent trans people, both by talking about them and, more importantly, letting them talk, we could create a safer space for everyone.

As I closed my conversation with Tebble, I asked him what cis people like me — people who care and want to contribute constructively to the conversation without saying something wrong — can do.

“Loosen up,” he said. “Your job as a writer or media producer is to not talk for trans people, but to allow trans people to talk through you.”

I wrote that down.

Porn Experts Weigh In: Is the Industry Safe Enough for Performers?

Posted on November 25, 2014

Tasha Reign celebrated her 25th birthday this year, and earned a bachelor’s degree in gender studies from the University of California Los Angeles. She’s a vegetarian and loves Disney movies. Oh, and she’s a porn star.

When I called Reign, she was eager to talk. Her industry has been in the limelight the last few days after a performer was thought to have had sexual contact with an HIV carrier. The Free Speech Coalition, the trade association which represents the adult film industry in the U.S., immediately called for a moratorium on filming, while the risk to other performers was assessed. On Monday night, that moratorium was lifted, after it was determined that no risk was posed to performers (the association couldn’t say more because of medical privacy laws). Today performers can go back to work. But porn experts know what’s coming: more questions about whether their industry is safe enough.

Reign says yes. Every time she performs, she must prove that she has been tested for sexually transmitted infections in the last fifteen days, and that that test was clean. She has been performing for four years and never had a problem. “Sexually, our industry is safer than any other,” she said, noting that when most people have sex, they are relying on trust and communication with their partners… or blind luck. In her job, on the other hand, she has documentation that the person she’s sleeping with isn’t infected.

As an adult film performer, “your business is your health,” she said, emphatically. And that business can be very different from the sex people have in their private homes. Reign sees this as especially obvious in laws like Los Angeles’ Measure B, which required that porn performers in Los Angeles use condoms on set. It was supported by organizations like the AIDS Health Foundation, which held that condoms were a crucial part of HIV prevention. The measure effectively drove all adult film production out of Los Angeles, to areas where such regulations don’t exist. The difference between the condom law and the moratoria, says Reign, is that the performers actually have a say in temporarily stopping filming. “Nobody really freaks out,” she said, when someone tests positive for HIV, partly because the safeguards in place are so strong, and partly because most of the time, the test turns out to be a false positive.

Dr. Chauntelle Tibbals, a sociologist who studies the porn industry, agrees. When she heard about the moratorium, she thought, “This happening yet again? And also, thank goodness. Because… the fact remains that there has not been a transmission on set [of HIV] since 2004. Which means given the hundreds of thousands of porn scenes filmed and the hundreds of thousands of transmissions, that has not happened in ten years.” And that’s thanks to safeguards like preemptively halting filming if there’s any chance of infection.

And as for the risks porn actors take in the line of work, Tibbals and Reign both think that the very question implies a value judgment. “There are risks in every profession, and people think about what they’re risking,” Tibbals said. Reign was more straightforward: she asked me if I would ask a professional football player the same question. And that may come down to the heart of it; pornography is typically viewed as so fringe that performers must justify taking any risks at all to do their jobs.

Reign thinks sexual education in America is so poor that young people turn to porn as their educator, and in turn, America tries to clean porn up. But that’s not the pornographer’s job, Reign says. And this schizophrenic outlook in which pornography is at once the black sheep of society and our teacher has caused an obsession with its rules and regulations, even as America insists it’s not watching.

I asked Reign if the situation was a bit like prohibition — people being uncomfortable with porn, and so trying to make it “go away.”

She laughed.

“Yeah, and it’s always the people who fight it who are the ones watching it,” she said.

The AIDS Health Foundation was unavailable for comment.

This story was originally published on NeonTommy.

Thousands in California May Lose Health Insurance Over Missing Paperwork

Posted on November 25, 2014

Ten thousand people are about to lose their health insurance, despite being approved for Covered California, the statewide health care program. But those people, the federal government argues, aren’t Californians. And immigrants rights groups are surprisingly quiet about it.

This week, Covered California will send “pre-termination notices” to 10,000 individuals who they say haven’t adequately proven that they are legal California residents, the Los Angeles Times reports. In order to verify residency, an applicant must provide proof of eligibility, such as a social security card or permanent resident documents. But not everyone has submitted the required paperwork. Last month, Covered California warned 148,000 people comprising 98,000 families that they were at risk of losing their insurance soon. This week, that clock is ticking down. The cancellation notices may arrive any day. But you wouldn’t know that if you visited pro-immigration websites today.

A trip to popular sites like the Immigration Advocates Network, the American Civil Liberties Union, and Reform Immigration for America today won’t turn up any pitchfork-wielding about the thousands who may go without health care, but instead the usual stories about border issues and harsh immigration laws. In fact, most organizations didn’t seem too upset by the news.

Joseph Villela, Policy Director for the Coalition for Humane Immigrant Rights of Los Angeles, told me not everyone shouldn’t panic. Describing the amount of people who are losing their insurance, he said, “the numbers are very small.” In fact, he sees the data as good news. “We have more than 2.3 million folks who are legal immigrants,” he told me, “We’re encouraged by the numbers because they are low in comparison.” Encouraged?

And yet, he’s right. Over 3 million people signed up for Covered California since registration began last November. Of those 3 million, less than one percent of them had to follow up with more documentation of their citizenship or residency, and less than half of those people are still unverified. In the final tally, about a third of a percent of those insured may lose their insurance. 99.65% are fine. By any metric, those are pretty good odds, but especially for the state with the largest immigrant population in the country, since the rules about which immigrants qualify for coverage are a bit complex. And that’s Villela’s biggest concern.

“There might be some folks who may have misread the information or thought that they qualified but they don’t qualify,” he said, adding that his organization urges Covered California to be flexible and understanding as legal immigrants clarify their unique situations. Some might need help or patience as they collect their documentations; others might need forgiveness for simply not understanding that they didn’t qualify.

As the law stands now, anyone who doesn’t qualify for the ACA but has been getting benefits could be charged back fees. For a low-income earner, that can be a rather terrifying possibility. When I asked Villela about the penalties, he paused.

“I hope they don’t do anything that punitive,” he said, adding that studies show that recent immigrants are actually healthier than natives, so pushing them out of the healthcare system or punishing them for participating is a bad move for everyone. And what about those immigrants who are, in fact, undocumented?

“A disease does not discriminate based on citizenship,” Villela said. “And so it’s in the best interests for our state to really have a system that provides preventive care to all its residents, because then in the long-term, that’s going to save us money.”

That point might strike a chord with lawmakers one day, but for now, Covered California is just trying to help as many people as possible keep their insurance.

I called the line myself, following the dialing instructions for someone who is having verification problems. I expected to wait about an hour to talk to a human.

It took eighty seconds.

This story was originally published in NeonTommy.

White Lies for Life: Crisis Pregnancy Centers in Los Angeles

Posted on November 25, 2014

Gloria was sixteen when she entered a “crisis pregnancy center” and said she was afraid that she was pregnant. The only volunteer there, a sweet woman behind an uncluttered desk, asked her to confirm her pregnancy with a urine test. When it came back positive, Gloria cried. She wasn’t ready to have a baby, and she couldn’t afford one. Whatever happened next, Gloria told the woman, she wasn’t going to be a mother. She needed an abortion, she said.

But Gloria wasn’t going to get one here. The clinic was actually an anti-abortion pregnancy center, where staff and volunteers attempt to talk women out of abortions.

The centers, which operate largely on a bait-and-switch model and intercept clients intending to find an abortion clinic, have now become easier to find than abortion services themselves, with over 2,500 centers in the United States. These “crisis pregnancy centers” or CPCs outnumber abortion clinics by about 700, according to the New York Times. But they are not just quaint small-town, mom-and-pop operations. They are big business, and they can be found in unexpected places… even Los Angeles.

Normally considered a liberal bubble, Southern California is known for its progressive politics, and most would expect it to be full of pro-choice proponents, and health centers offering speedy and discreet abortion services. In reality, while California has some of the strongest abortion access in the U.S., with 160 clinics offering abortive services, it is met in even greater force by anti-abortion pregnancy centers. Today, there are over 200 CPCs in California, and at least thirty of them are in L.A. County. While these centers receive federal tax breaks, in California they may receive no state grants, so they turn to private donors, inside and outside California, to fund their missions within liberal L.A., and convert the lost. From God’s country, donors can impact leftist L.A. in the form of a checkbook.

As Gloria sat in the exam room, she pondered her options aloud, as the volunteer steered her further and further from the option she actually wanted. Gloria was frustrated and becoming angrier by the second.

But Gloria wasn’t pregnant. Not even close. She had come to the center on a “muckraking” assignment from her high school English teacher, who instructed each student in the class to pick an organization or company that might be doing something unethical, and sting the place. Gloria immediately thought of the center. She had always been interested in abortion access, and she knew how to identify an anti-abortion center in one quick glance.

They advertise their free pregnancy tests, make vague promises about their services, and often are just a few steps from an actual abortion provider, Gloria had learned. She found the center immediately. As soon as her test came back positive, the woman working there dropped the act. She was no longer a potential abortion provider: she was here to talk Gloria out of ending her pregnancy.

The woman comforted Gloria as she cried in the middle of the exam room, which she described to me as “an Anne Geddes nightmare,” referencing the photographer known for placing infants in unlikely places, like the middle of a tulip. But the volunteer wasted no time; before Gloria could process what was happening, she had turned on a video about the horrors of abortion.

“The video… basically misrepresented the size of the fetus, said that the zygote can feel pain, it’s got a heartbeat, it’s thinking. That so many women are injured by them, so many women are traumatized by them, there’s a higher rate of breast cancer [among women who have had abortions].” That’s typical of these centers. When NARAL sent undercover activists to CPCs across California, every single clinic gave false or misleading information, from telling women that they would ruin their fertility, to suggesting that women who have abortions are putting themselves at risk of suicide (false and false).

Gloria was living in a small, conservative town when she performed her muckraking assignment. She turned in her paper, saw it printed in the school newspaper, and went back to her ordinary 16-year-old life. Until the letter came.

The center was threatening to sue the school newspaper for libel, if Gloria didn’t post a retraction. They sent the message through one of Gloria’s teachers, a board member of the very clinic she had infiltrated.

“He asked me, didn’t I know that abortion was murder? This was a public school,” she said. Gloria, scared and 16, posted a retraction. Form then on, she knew these centers meant business. But they didn’t want anyone to know exactly what that business was. Gloria became an abortion-access advocate, and one of her main passions is blowing the lid off CPCs.

Gloria’s got her work cut out for her. Since her teenage sting operation, anti-abortion pregnancy centers have become a major enterprise.

And convert, they do.

Peggy Farren was 26 and engaged when she discovered she was  pregnant. Her fiancé balked at the idea of having a child, and insisted she terminate the pregnancy. Unsure of what to do, but willing to consider all her options, Peggy turned to a coworker, who suggested she go to the pro-life clinic down the road. There, the staff helped her to find a doctor who would see her for free. They helped her find housing, gave her a car seat for her baby-to-be, and found her a teaching hospital, where she could deliver her child for a small fee. She says this kindness helped turn her into a “feminist for life.”

“I was pro-choice before that experience,” she told me. I asked her what that meant to her, and she clarified that she mostly hadn’t thought about it before then. Why would she? She hadn’t needed to. But once she was pregnant, she had to face the pro- and anti-abortion divide. And she chose a side.

“While Planned Parenthood tried to prey on my bad situation to make money, these volunteers all helped me!” she said. “They didn’t get paid. They did it out of love.”

Then she echoed the motto of Feminists for Life: “Women deserve better than abortion.”

But Gloria’s experience wasn’t the same. Even though she wasn’t really pregnant, she was overwhelmed by the information on the video, thinking of the shoes she would be in if she really had been pregnant when she walked through the door. She said she would need time to think about it. The sympathetic staff woman feebly said she would get Gloria some prenatal vitamins. When she came back, she had a pair of crocheted rainbow booties in her hand.

“Oh, we’re out of prenatal vitamins,” she said, “But I brought you these.” She handed the booties to Gloria.

And so, Gloria sat with a pair of booties in her hand, staring at the symbol of a baby she would never have. A  gift that she was sure was intended to make her picture the child she was ethically obligated to birth. A $2 gift to offset the $241,000 it would take to raise the child for eighteen years. She stared at the booties and left. Nine years later, Gloria really did become unexpectedly pregnant.

She didn’t even consider a crisis pregnancy center. She went immediately to Planned Parenthood and terminated the pregnancy.

When I told Gloria about Peggy’s experience, she paused thoughtfully.

“Well, that may have been her experience thirty years ago,” she said (Peggy’s son is now 28), “but it’s not now.”

Gloria has been volunteering in abortion access ever since her own eye-opening experience, and has seen these centers firsthand. And, she says, they are typically privately funded and shoddily organized. And most importantly, their purpose differs from the purpose of the woman entering their doors: she may come to end her pregnancy, but the center is there to stop her at all costs.

That is reflected in the Yelp reviews for the crisis pregnancy centers across Los Angeles. A typical review reads, “I came here for information about abortions. The ‘nurse’ spent an HOUR convincing me not to get one, even bringing herself to tears in her efforts!”

I stopped by one clinic in the heart of Hollywood. It was called “Hollywood Women’s Center of Los Angeles,” and it boasted free pregnancy tests on a large blue and white sign. The lettering and the color scheme looked strikingly familiar… Almost too familiar. Then it struck me. Less than a block away, I saw the same color scheme, on a familiar sign tucked into a mini-mall: Planned Parenthood. The placement and coloring were perfect for catching a woman walking through the busy parking area off the major thoroughfare, trying to find her way to her appointment.

I stopped in to visit their neighbors, a coffee shop with a bohemian feel. Two men in berets sat leaning against a wall, gesticulating wildly and talking about Woody Allen.

“Do you talk to your neighbors at all?” I asked the barista, as I dove into a chocolate mini-cupcake.

“Oh, them?”  she said, eyeing the wall between her establishment and the next. “No, I don’t talk to them.”

“Do you know what they do?” I asked.

“Yes,” she said “they trick women into not having abortions.”

The center is part of a network of L.A. offices in Los Angeles called Avenues Pregnancy Clinics, and their self-description on Yelp reads “We are a medically licensed non-profit organization dedicated to serving the needs of anyone facing an unplanned pregnancy. We are committed to educating our patients on all pregnancy options and providing free and confidential services.”

But their government-filed 990, the tax document all nonprofits must file at year’s end, tells a different story. There, Avenues says “the organization has one sole purpose: to provide services to expectant mothers,” and explains that they “compassionately present Biblical truth resulting in changed lives to the Glory of God.” Rather different from “educating patients on all pregnancy options.” The bait may be shallow, but the switch is deep.

Katherine Kramer, an abortion provider who runs a network devoted to unmasking Crisis Pregnancy Centers, told me that that switch didn’t surprise her at all.

“I had a woman report that a CPC did an ultrasound and that she saw a ‘live baby with a beating heart’ but it turned out she had an early ectopic [pregnancy]… I never understood what happened there. My guess is that they showed her a videotape of a normal pregnancy on the ultrasound machine.” A lie for a life.

Kramer says CPCs have actually done the opposite of what they are intended to do; they have delayed abortions, making them more dangerous, more serious, and further along in the fetus’ development.

“Most women, by the time they come to me, have wasted weeks with the CPC,” she said.

I contacted Avenues Pregnancy Clinics to get their perspective on their controversial mission. The front desk referred me to the president, and the president didn’t return my calls. Emails went unread.

Finally, I called and said I would like to hear more about volunteering, and got someone on the line.

“I’m sorry, we aren’t accepting volunteers at this time,” she said, “but we appreciate it.”  And she hung up.

It seems the crisis pregnancy center culture is not an easy one to enter, perhaps because there are so many people, like me, trying to get at their real objectives. When your entire business operates on a bit of a trick, having too many people in on the game may be a death knell.

There are only two ways to get inside, it seems: be pregnant, or pretend to be.

Gloria tried the second way. And now, she tries to raise awareness of their true purpose so fewer people will go in the first way.

But in Los Angeles, where business is booming, it only takes a blue sign and a half a block walk from Planned Parenthood to make Gloria’s job that much harder.

This article originally published in Free Inquiry Magazine.