Commentary Human Rights

Why I’m Disturbed by Screening for Intersex Traits in Utero

Claudia Astorino

I strongly feel that safe, legal abortion must be accessible for everyone, including intersex folks like me. But I also want to question why our society is attempting to erase intersex people, either before or after birth.

As an avid proponent of reproductive rights, I strongly feel that safe, legal abortion must be accessible for everyone, including trans* people, gender-nonconforming people, and intersex folks like me. That being said, I’m concerned—disturbed, really—by an increasingly common feature of prenatal care that’s affecting my community: screening for intersex traits in utero, and making reproductive decisions based on that screening.

And I can’t help but feel that this simply isn’t OK.

Since the 1990s, intersex activists have advocated for the right to bodily autonomy, first in the United Kingdom, later in the United States, and now globally. We’ve been working to end the practice of using medical means to solve a social problem: that people are uncomfortable with intersex bodies. To this end, we’ve been educating others that intersex people exist, what intersex means, and why the routine medical practices used to alter our bodies without our consent must end. Recently, however, intersex activists have become aware that in addition to speaking out against how intersex people are treated after birth, we need to talk about the fact that intersex people are being prevented from being born in the first place.

Intersex people are those who have a combination of traits traditionally considered “male” or “female” in the same body—and sometimes additional traits uncommon for typical male or female individuals. While external genital form is the trait most commonly thought of by those unfamiliar with intersex people, being intersex is not specifically about genitals at all, and not all intersex people have atypical genital form. There are many different way our bodies look and function. Knowing that an individual is intersex actually tells you very little about who they are, what their bodies look like, and how they identify. Intersex is more of an umbrella term that encompasses all the variations in what people can look like in terms of sex anatomy. Intersex people are often seen as being outside of “normal” male and female bodies, but we’re really a part of the natural variation in biological sex.

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The harmful framing of intersex people as a problem to be “fixed” largely grew out work by the New Zealand psychologist John Money in the 1950s, who argued that children could be happily raised as boys or girls regardless of their biology at birth with a supportive environment that reinforced the child’s assigned (what we today call) gender. Additionally, Money advocated that physically altering intersex children’s bodies to conform more closely to their assigned gender identity would reinforce that they were “normal” boys and girls, and recommended that surgeries be performed when children were very young so they wouldn’t be negatively affected in adulthood by remembering childhood procedures.

Money’s most famous case supposedly supporting these ideas was that of David Reimer, who was not intersex, but whose parents raised him as a girl on Money’s recommendation. Reimer had a circumcision that did not proceed as planned and his family felt he could not be raised as a boy without a “normal” penis. When Reimer was socialized as female in his younger years, Money declared his philosophy and methods successful and recommended them to “fix” intersex people. While Reimer ultimately did not continue to identify as female (he lived as a man before tragically committing suicide in his 30s), the legacy of Money’s ideas are still often considered legitimate by clinicians—and by society.

When being intersex is framed as a medical problem, parents and doctors are given proxy consent to make decisions about our bodies—decisions they aren’t really entitled to make. This is why cosmetic surgeries and/or other medical “treatments” have continued to be routinely performed on intersex babies and young children. Parents and doctors make decisions to alter the bodies of intersex kids, even though these procedures aren’t for medical benefits and children can’t consent to them.

We deserve so much better.

While intersex activists are fighting mainly for bodily autonomy, many of us have noted that screening for certain forms of being intersex has become increasingly common, the outcomes of which are unsettling at best. Surgeries and other treatments after birth and post-screening abortion are both performed to prevent intersex traits, especially atypical genitals—but it’s more than that. They are both ways to prevent people who don’t clearly fall into male or female categories from existing, because the fact that this happens makes people uncomfortable.

First of all, fetal screening isn’t necessarily effective for many forms of being intersex: Typical males, typical females, and people who are intersex often share the same chromosome makeup, or karyotype. Even if a karyotype suggesting intersex traits is known, doctors may be unable to confirm intersex traits in a fetus when atypical genital form isn’t present (or simply can’t be confirmed) via ultrasound.

And when apparently intersex traits are detected in a fetus, clinical facilities often describe being intersex with stigmatized language that, again, automatically—and egregiously—equates having intersex traits with having a medical condition. For example, one form of being intersex that can more easily be screened for in utero is congenital adrenal hyperplasia (CAH), in which more testosterone than average is produced by the body. CAH individuals may have XX or XY chromosomes, and depending on testosterone production may exhibit traits such as atypical external genital form. Some CAH people may also exhibit “salt-wasting,” or excess salt and water loss in urine—which, unlike atypical genital form, is an actual medical concern and requires treatment. However, this does not mean that the CAH form of being intersex is itself a medical condition. After all, ovarian cancer is a medical concern that is mostly exhibited by typical women, but this correlation does not make being a woman a medical condition.

When learning their child or fetus is intersex, the information that prospective parents receive from doctors can vary substantially. Some doctors make it clear that people perceive intersex individuals differently: Some advocate that intersex people don’t have medical conditions that need to be “fixed,” while others think they do. Other doctors simply present being intersex uncritically as a medical problem. It all depends on the doctor and their viewpoints. It also depends on the parents themselves: They may not have heard about intersex people before, or may not have access to resources to learn more. Plus, if health-care providers are using a lot of scientific jargon to explain how development works, parents may wind up more confused and scared than they were before—and ultimately believe there is something wrong with their fetus or child.

After CAH is identified during pregnancy, the prospective parent or parents can make several choices. The fetus may be allowed to develop naturally, which is strongly recommend by intersex activists. Alternatively, the fetus may be treated with the enormously controversial drug dexamethasone, which may prevent the development of certain CAH characteristics like atypical genital form, but may be harmful for fetal development and is not recommended by some doctors.

The final option is to abort the fetus that would be born an intersex child.

Sadly, there are many reasons intersex children are considered undesirable by prospective parents. They may not understand what intersex means and are afraid to have a child that cannot be easily categorized as male or female. There are many scenarios parents fear where others may react negatively to their intersex child: when the baby-sitter changes a diaper, when company sees their child running around without pants on, when family or friends or strangers ask, “Is it a boy or a girl?” and they’re not sure how to answer that question. Parents also fear their baby may grow up be gay or gender non-conforming because of a fundamental misunderstanding about body parts, sex, gender, and sexual orientation—which are different things and can’t be conflated into a single mish-mashed category. Parents feel the pressure to make the best decisions to protect their child and offer them a safe, “normal” life. Parents may feel that without medical intervention, they can’t give this kind of life to a child. Maybe some feel like it’s too big a risk to bring them into the world at all.

Prospective parents of intersex kids are afraid of a lot of things.

As an intersex person, it’s difficult for me to understand why we’re perceived as so scary that we’re unwelcome to exist in the world. I have had, and continue to have, difficulty reconciling my strong belief that all pregnant persons must have the right to choose to obtain an abortion with my anger and sadness that someone who wants to raise a healthy, beautiful child would choose not to raise that healthy, beautiful child if they were intersex.

I want to protect the right to choose. I also want to question why our society is attempting to erase intersex people, either before or after birth. Both aborting intersex fetuses and cosmetically (often surgically) altering intersex children’s bodies are ways to make intersex people disappear, go away. The implied message is that acceptable people aren’t intersex: Don’t be intersex, or don’t be at all.

I can’t endorse this kind of thinking. I want to live in a world with intersex people like me in it, where our bodies and personhood are valued. We need to raise awareness that intersex people exist, accept that intersex people are not medical conditions that need to be “fixed,” and celebrate intersex people and bodies as we naturally are. I’m admittedly just a little bit biased, but I think we’re pretty great, if I may say so myself. But without more awareness of these things, I’m afraid there won’t be many of us in the future. That’s not a world I want to live in.

I encourage all reproductive persons to be open to having a fantastic intersex person in their lives. We are very much worth choosing.

Analysis Law and Policy

Federal Court Says Trans Worker Can Be Fired Based on Owner’s Religious Beliefs

Jessica Mason Pieklo

“Plain and simple, this is just discrimination against a person because of who she is,” said John Knight, the director of the LGBT and HIV Project of the American Civil Liberties Union of Illinois, in an interview with Rewire.

When the U.S. Supreme Court ruled in 2014 in Burwell v. Hobby Lobby that the owners of secular for-profit businesses could challenge laws they believed infringed on their religious liberties, civil rights advocates warned that the decision was just the start of a new wave of litigation. On Thursday, those predictions came true: A federal district judge in Michigan ruled that a funeral home owner could fire a transgender worker simply for being transgender.

The language of the opinion is sweeping, even if the immediate effect of the decision is limited to the worker, Aimee Stephens, and her boss. And that has some court-watchers concerned.

“Plain and simple, this is just discrimination against a person because of who she is,” said John Knight, the director of the LGBT and HIV Project of the American Civil Liberties Union of Illinois, in an interview with Rewire.

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According to court documents, Stephens, an employee at Detroit’s R.G. & G.R. Funeral Homes, gave her boss—the business’ owner—a letter in 2013 explaining she was undergoing a gender transition. As part of her transition, she told her employer that she would soon start to present as a woman, including dressing in appropriate business attire at work that was consistent both with her identity and the company’s sex-segregated dress code policy.

Two weeks later, Stephens was fired after being told by her boss that what she was “proposing to do” was unacceptable and offensive to his religious beliefs.

In September 2014, the Equal Employment Opportunity Commission (EEOC) filed a lawsuit on behalf of Stephens, arguing the funeral home had violated Title VII of the federal Civil Rights Act, which prohibits employment discrimination. According to the EEOC, Stephens was unlawfully fired in violation of Title VII “because she is transgender, because she was transitioning from male to female, and/or because she did not conform to the employer’s gender-based expectations, preferences, or stereotypes.”

Title VII of the Civil Rights Act allows those employees who have been discriminated against in the workplace to collect money, known as civil damages. Those damages usually come in the form of lost wages, back pay, and funds to make up for—to some degree—the abuse the employee faced on the job. They are also designed to make employers more vigilant about their workplace culture. Losing an employment discrimination case for an employer can be expensive.

But attorneys representing Stephens’ employer argued that the Religious Freedom Restoration Act (RFRA) protected their client from legal liability for firing Stephens. On Thursday, a federal court agreed. It said that paying such damages for unlawfully discriminating against an employee could amount to a substantial burden on an employer’s religious beliefs. 

According to the court, despite the fact that Stephens’ boss admitted he fired her for transitioning, and despite the fact that the court found this admission to be direct evidence of employment discrimination, RFRA can be a defense against that direct discrimination. To use that defense, the court concluded, all the funeral home owner had to do was assert that his religious beliefs embraced LGBTQ discrimination. The funeral home had “met its initial burden of showing that enforcement of Title VII, and the body of sex-stereotyping case law that has developed under it, would impose a substantial burden on its ability to conduct business in accordance with its sincerely-held religious beliefs,” the court wrote.

In other words, Hobby Lobby provides employers a defense to discriminating against LGBTQ people on the basis of religious beliefs.

“The RFRA analysis is extremely troubling, and the implications of it [are] as well,” said Knight. “I believe this is the first case applying RFRA to a Title VII claim with respect to nonministerial employees.”

If the scope of the opinion were broader, Knight continued, “this would allow [employers in general] to evade and refuse to comply with uniform nondiscrimination law because of their religious views.”

This, Knight said, is what advocates were afraid of in the wake of Hobby Lobby: “It is the concern raised by all of the liberal justices in the dissent in Hobby Lobby, and it is what the majority in Hobby Lobby said the decision did not mean. [That majority] said it did not mean the end of enforcement of nondiscrimination laws.”

And yet that is exactly what we are seeing in this decision, Knight said.

According to court documents, Stephens’ boss has been a Christian for more than 65 years and testified that he believes “the Bible teaches that God creates people male or female,” that “the Bible teaches that a person’s sex is an immutable God-given gift, and that people should not deny or attempt to change their sex.” For Stephens’ former boss, Stephens’ transition to a woman was “denying” her sex. Stephens had to be fired, her boss testified, so that he would not be directly complicit in supporting the idea that “sex is a changeable social construct rather than an immutable God-given gift.”

If the “complicit in denying God’s will” sounds familiar, it should. It has been the exact argument used by businesses challenging the birth control benefit of the Affordable Care Act. Those business owners believe contraception is contrary to God’s will and that complying with federal law, which says birth control should be treated in insurance policies as any other preventive service, makes them complicit in sin. Thursday’s decision cites Hobby Lobby directly to support the court’s conclusion that complying with federal nondiscrimination law can be avoided by asserting a religious objection.

Think of the implications, should other courts follow this lead. Conservatives have, in the past, launched religious objections to child labor laws, the minimum wage, interracial marriage, and renting housing to single parents—to name a few. Those early legal challenges were unsuccessful, in part because they were based on constitutional claims. Hobby Lobby changed all that, opening the door for religious conservatives to launch all kinds of protests against laws they disagree with.

And though the complaint may be framed as religious objections to birth control, to LGBTQ people generally, and whatever other social issue that rankles conservatives, these cases are so much more than that. They are about corporate interests trying to evade regulations that both advance social equity and punish financially those businesses that refuse to follow the law. Thursday’s opinion represents the next, troubling evolution of that litigation.

CORRECTION: This article has been updated to clarify John Knight’s position with the American Civil Liberties Union of Illinois.

News Human Rights

Mothers in Family Detention Launch Hunger Strike: ‘We Will Get Out Alive or Dead’

Tina Vasquez

The hunger strikers at the Berks County Residential Center in Pennsylvania are responding to recent comments made by Department of Homeland Security Secretary Jeh Johnson in which he said the average length of stay in family detention is 20 days. The women say they've been in detention with their children between 270 and 365 days.

On Monday, 22 mothers detained inside Pennsylvania’s Berks County Residential Center, one of the two remaining family detention centers in the country, launched a hunger strike in response to recent comments made by Department of Homeland Security (DHS) secretary Jeh Johnson in which he said the average length of stay in family detention is 20 days.

The average length of stay for the 22 hunger strikers has been between 270 and 365 days, they say.

Erika Almiron, director of the immigrant rights organization Juntos and a core member of the Shut Down Berks Coalition, informed the women detained inside Berks of Johnson’s recent comment via email, hoping they would want to release a statement that her organization could help amplify. Instead, the women decided to launch a hunger strike, with recent reports indicating the number of participants has risen to 26.

“When Johnson said [ICE] only detain[s] people for 20 days, he said that thinking that no one would care,” Almiron told Rewire. “Our goal has always been to make people aware of the inhumane nature of detention in general, but also that children are being locked up and moms are being held indefinitely.”

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By definition, “family detention” means the women in Berks are detained alongside their children, who range in age from 2 to 16 years old. In an open letter addressed to Johnson, the women share that their children have routinely expressed suicidal thoughts as a direct result of being imprisoned. The women allege that they are being threatened by psychologists and doctors in the detention center for making this information public, but are choosing to move forward with the hunger strike.

In part, the letter reads:

The teenagers say being here, life makes no sense, that they would like to break the window to jump out and end this nightmare, and on many occasions they ask us if we have the courage to escape. Other kids grab their IDs and tighten them around their necks and say that they are going to kill themselves if they don’t get out of here. The youngest kids (2 years old) cry at night for not being able to express what they feel … We are desperate and we have decided that: we will get out alive or dead. If it is necessary to sacrifice our lives so that our children can have freedom: We will do it!

An August 2015 report about the Berks center by Human Rights First, a human rights advocacy organization, seemed to confirm what women and children detained inside of the facility have been saying since the detention center’s inception in 2001: Detention is no place for families and being imprisoned is detrimental to the health and well-being of children.

According to the Human Rights First report, detained parents in Berks experience depression, which only exacerbates the trauma they experienced in their countries of origin, and their children exhibit symptoms of depression, anxiety, and increased aggression. Frequent room checks that take place at 15-minute intervals each night also result in children experiencing insomnia, fear, and anxiety, the report says.

Families detained inside of Berks have no real means to alleviate these symptoms because the facility does not provide adequate mental health care, according to the report. Human Rights First notes that Berks does not have Spanish-speaking mental health providers, “though the majority of families sent to family detention in the United States are Spanish-speaking and many have suffered high rates of trauma, physical and sexual violence, and exploitation.”

The organization also explains that only 23 of the total staff at Berks (or less than 40 percent) reportedly speak some conversational Spanish, “making it difficult for many staff members to effectively communicate with children and their parents.”

Berks has a history of human rights abuses. A 41-year-old former counselor at Berks was recently sentenced to between six and 23 months of jail time for the repeated sexual assault of a 19-year-old asylum-seeking mother. The young woman, along with her 3-year-old son, fled sexual domestic violence in her native Honduras. The assaults on the young mother at the detention center were witnessed by at least one of the children detained with her.

There have also been health-care issues at Berks, including the failure by the detention center to provide adequate services, according to Human Rights First.

The organization was able to collect some of the letters women detained at Berks wrote to Immigration and Customs Enforcement (ICE), along with ICE’s response to their concerns. One woman, detained at Berks for four months, told ICE that her 5-year-old daughter had diarrhea for three weeks and that the detention center’s doctor failed to provide her child with any medication or other care. The woman asked for “adequate medication” for her daughter and for the opportunity to have her asylum case handled outside of detention. ICE’s response: “Thank you! You may disolve [sic] your case at any time and return to your country. Please use the medical department [at Berks] in reference to health related issues.”

Using family detention as a way to handle migrants, especially those fleeing violence in Central America, has been called inhumane by many, including activists, advocates, mental health specialists, and religious leaders. But the prolonged detainment of women and children at Berks is in violation of ICE’s own standards.

In June of 2015, Johnson announced a series of reforms, including measures aimed at reducing the length of family detention stays for families who had passed a protection screening. But then earlier this month, Johnson defended family detention, saying, “The department has added flexibility consistent with the terms of the [Flores] settlement agreement in times of influx. And we’ve been, by the standard of 1997, at an influx for some time now. And so what we’ve been doing is ensuring the average length of stay at these facilities is 20 days or less. And we’re meeting that standard.”

But all of the 22 mothers on hunger strike at Berks have been in detention for months, according to the letter they sent Johnson.

There’s also the issue that in July, a federal appeals court ordered DHS to end family detention because it violates Flores v. Johnson, which determined that children arriving to the United States with their mothers should not be held in unlicensed detention centers. Soon after, family detention centers scrambled to get licensed as child-care facilities (a battle they’re losing in Texas), but the Pennsylvania Department of Human Services (PA DHS) licensed Berks to operate as a children’s delinquency center. In October 2015, PA DHS decided not to renew the license, which would have expired February 21, 2016, because the facility holds asylum-seeking families as opposed to only children, as the license permitted. Berks appealed the decision to not renew its license, and continues to operate until it receives a ruling on that appeal.

“Our argument from the start has been that we don’t think any of this is legal,” Almiron told Rewire in a phone interview Friday afternoon. “What is happening inside of Berks is illegal. I have no idea how they continue to operate. Right now, Berks does not have a license. It was revoked because the license they did have didn’t fit what they were doing. They also have prolonged detention. Women who are hunger striking have been there 360-something days, but then Jeh Johnson says it’s only 20 days. There is no accountability with DHS or ICE. There are numerous ways [DHS and ICE are] not accountable, but Berks is a prime example. There is no transparency and they can to change the law whenever they like.”

Neither DHS nor Berks responded to requests for comment from Rewire.

Advocates have expressed concerns that the women in Berks will be retaliated against by ICE and detention center employees because of their participation in the hunger strike. As Rewire reported, when women at Texas’ T. Don Hutto Residential Center, a former family detention center, launched a hunger strike in November 2015, participants alleged that ICE used solitary confinement and transferred hunger strikers to different facilities, moving them further from their family in the area and their legal counsel. ICE denied a hunger strike was even taking place.

In December 2015, men detained at the Etowah County Detention Center in Gadsden, Alabama, ended a 14-day hunger strike after a local judge authorized officials to force-feed one of the hunger strikers because of his “deteriorating health” due to dehydration. Advocates told Rewire force-feeding was being used as a form of retaliation.

Almiron said the hunger strikers at Berks have already been threatened by guards, who told the women that if they continue to hunger strike and they get too weak, their children will be taken away from them. The organizer said the letter the women wrote to Johnson shows their bravery, and their understanding that they are willing to take whatever risk necessary to help their children.

“Honestly, I think they’ve been retaliated against the moment they came to this country. The fact that they’re in detention is retaliation against their human survival,” Almiron said. “Retaliation happens in detention centers all the time, women are threatened with deportation for asking for medical care for their children. These women are incredibly strong. In my eyes, they’re heroes and they’re committed to this fight to end family detention, and so are we.”

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