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Forced Into Genital Surgery As Babies, Intersex Adults Fight Back

By Linze Rice | October 26, 2017 5:22pm
 Protesters are demanding Lurie Children's Hospital stop perofmring "medically unnecessary" genital surgeries on healthy intersex children.
Intersex Protest
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DOWNTOWN — When Pidgeon Pagonis was born, the baby's parents and doctors were presented a choice: should the newborn be a boy or a girl?

Because Pagonis was born intersex — which describes about 1.7 percent of babies born with both male and female sex traits or characteristics — the answer was not immediately clear.

Those overseeing Pagonis' care at Children's Memorial Hospital, which is now Lurie Children's Hospital, told Pagonis' parents it would be safer for the infant to be female and live as a girl, Pagonis said. 

Now 31, Pagonis is fighting back against that lack of choice — and speaking publicly about the personal trauma caused by multiple invasive, damaging genital surgeries.

Having learned of and embraced being intersex, Pagonis now uses "they/them" pronouns and describes their gender as being non-binary, or not distinctly a man or a woman. 

"I don't believe that non-intersex surgeons or parents should have the right to surgically alter a healthy intersex person's body, and their genitalia specifically, because of all the problems that arise from it," Pagonis said. "It's a violation of that child's human rights, and I don't understand why it happens."

Several prominent medical and political groups agree. On Thursday, the State Department issued a statement in honor of Intersex Awareness Day condemning the same surgeries Pagonis and other advocates protested outside Lurie Children’s Hospital, 225 E. Chicago Ave., Thursday afternoon. 

"We recognize that intersex persons face violence, discrimination, harassment, and persecution on account of their sex characteristics," department spokesman Heather Nauert said in a statement. "At a young age, intersex persons routinely face forced medical surgeries without free or informed consent. These interventions jeopardize their physical integrity and ability to live freely." 

In 2013, a United Nations special rapporteur on torture also condemned such surgeries and this summer, Human Rights Watch issued a report pointing out the "conflicting and inadequate standards of care" when it comes to surgeries performed on intersex children. 

As Common As Having Red Hair

About 1.7 percent of the population fits under the intersex umbrella, meaning they were born with gonads, chromosomes or other traits which aren't clearly male or female, or are present in both. The condition is about as common as being born with red hair, according to studies.

Still, the medical field often intervenes with "medically unnecessary" surgeries when a child is born with a sex variation, intersex advocates like Pagonis say.

At Thursday's protest at Lurie, Pagonis and other intersex advocates launched a new campaign aimed at ending sex assignment surgeries in intersex children.

In a statement, the hospital said it stood behind its intersex program.

"Lurie Children's is one of the national leaders in this field and is a strong advocate for intersex individuals," the hospital said in a written statement to DNAinfo, as well as in a message to staff. "Our Sex Development clinic is one of a handful in the country that cares for intersex infants, children and adolescents." 

The hospital noted that it is hosting the world's largest annual intersex support group conference next summer.

The hospital said in another statement that it was "committed to open communication" with intersex individuals. While it initially said Pagonis' views on intersex surgeries represented an "extreme position" on the issue, during the protest a hospital spokesman said calling the views "extreme" was an "unfortunate word use" by the hospital.

But Lurie would not detail its policy on treating intersex infants, or share what options are given to parents of intersex children by medical staff. 

Better Information Needed

Activists say the hospital has been unwilling to stop unnecessary genital surgeries on newborns, forcing them to conform to a gender "norm" of male or female. These surgeries impact sexual pleasure, family planning and self-esteem, Pagonis said.

Doctors "say they're doing it to help the child as they age so that they feel like they fit in and don't end up feeling suicidal and like they don't fit into a gender category," Pagonis said. "But actually what their surgeries end up doing to a lot of us is making us feel suicidal because we were lied to."

Medical professionals and parents should instead give intersex children the information they need to make a well-informed decision about health care and identity at an older age, Pagonis said.

(Story continues below)Pidgeon Pagonis, an intersex advocate, speaks during an event last month. [DNAinfo/Linze Rice]

A Childhood Of Lies 

For Pagonis, the surgeries began as an infant, when doctors at Children's, which was then in Lincoln Park, removed Pagonis' undescended testes. 

At the age of four, the hospital performed a clitorectomy on the toddler because it was thought to be a quarter of a centimeter too long, according to what doctors consider standard, Pagonis said. 

Around the age of 10, Pagonis noticed urinary issues, and again was brought back to Children's for an evaluation. 

Doctors told the pre-teen an irregularly-shaped urethra was the problem and was fixable by surgery. At the same time, doctors said surgery could help widen Pagonis' vagina for sex later in life, Pagonis said.

What Pagonis didn't realize, until reading the medical files at the age of 19, was that the hospital had actually performed a vaginoplasty — additional reconstructive surgery on the 11-year-old's genitals to shape the child's body into more of a female, Pagonis said.

In the meantime, doctors and family members kept Pagonis' intersex status a secret. 

Pagonis' parents even said the teen had ovarian cancer — a lie meant to explain away surgeries, doctor visits, prescriptions for hormones and the lack of a menstrual cycle, Pagonis said.

Others say they had similar experiences at other hospitals in Chicago and nationwide.

When intersex activist Sean Saifa Wall was 13, doctors at New York Presbyterian Hospital removed his undescended testes, too. 

He said his parents were told by doctors that the testes were "gonads" that could develop into cancer, so it would be best to remove them. Wall, now 38, was raised as a female, until he became aware of his status as intersex and medically transitioned back to male. However, due to the lack of research on intersex people who have not had genital surgery, there is no data to support the cancer claim. 

Hospitals shouldn't "force intersex children into a box they don't belong in," Wall said. "We're asking for basic respect."

Similarly, Lynnel Stephani Long, 54, said when she discovered she was intersex and sought answers on her medical treatment from the University of Chicago Hospital, she was told her single mother "condoned it." 

She was raised a male and put on a testosterone regiment, but inside, she always wondered why she felt so "feminine."

Learning she was intersex "answered a lot of questions I had as a child," she said. 

Doctors "tell the parents, 'We know what's best for your child,'" Long said. "I'm sorry, but I think parents know what's best ... [only] if given the proper education, given the proper choice over the rights of their children by medical professionals."

Because these surgeries are still happening, the activist said they feel they must speak out against them.

Sean Saifa Wall, an intersex activist. [DNAinfo/Linze Rice]

Helping Or Harming? 

For most of history, those who today might be considered intersex were left alone by the medical community, but in the 1950s doctors developed a binary standard for the sexes based on one's gonads.

Johns Hopkins University became the first hospital to assemble a team of physicians dedicated to essentially eradicating intersex conditions in childhood by performing genital surgeries early on. Doctors believed that by changing the genitals into either male or female, the child would grow up to be heterosexual and identify with the corresponding gender.

That practice picked up steam in the 1960s, when a psychologist named John Money provided theories that supported the university hospital's procedures — though the intersex person on whom Money based his claims in fact proved the opposite. 

His case was based on that of David Reimer, whose penis was accidentally cut off during circumcision and he was subsequently was raised as a girl. When Reimer grew up and discovered this, he resumed living as a man.

In 2004, Reimer killed himself.

Today, "sex development" hospital programs exist across the country.

However, there have been no long-term studies conducted that show the physical and psychological effects of these surgeries on unwitting patients, advocates say.

"It's not enough to do these surgeries and then just leave people to the wind," Wall said. "If we're about health care, if we're about people, then we need to be responsible for the harm that's been caused."

Pagonis said based on experience, their advice to doctors would be to "do no harm," and for parents to show support for their children regardless of physical differences.

"All you really need to do is love your child and protect them," Pagonis said. "Be in communication with them as they grow up about their bodies ... just love and protect them."