Sunday, January 17, 2016

Intersex babies and contentious surgeries

A mother and father sit and talk in a hospital room the day after the birth of their child. A doctor enters the room and shares an unexpected and unwelcome bit of news.

Upon closer examination, a nurse discovered their infant has both male and female reproductive anatomy.

The doctor tells the parents they need to decide if they are going to leave their baby’s genitals alone or if they are going to authorize the removal of either the male or female anatomy.

The controversy surrounding whether these kinds of surgeries should be performed has been fiercely debated for decades.


Background

Babies whose bodies don’t match our understanding of what it means to be physically male or female are known as intersex. In earlier times, some of them were referred to as hermaphrodites, but that term is considered by some to be insensitive.

There are many different reasons a person could be classified as intersex.

Intersex individuals may have both male and female reproductive tissue, mismatching internal and external genital anatomy, unusual hormone levels or an additional sex chromosome.

These conditions are known in the medical community as “disorders of sex development.”

However, University of Oregon professor and intersex expert Elizabeth Reis advocates changing the phrase to “divergence of sex development” to avoid the negative feeling associated with the term “disorder.”

While not all doctors agree which conditions should fall under that category, it’s estimated that about 1 in 2,000 people, or 0.05% of the population as a whole, are intersex.

Several intersex people were featured in this video created by Buzzfeed.




The debate begins

In the 1950s, a team of medical specialists at John Hopkins University pioneered genital reconstruction surgeries for Intersex babies. The team was under the leadership of psychologist John Money, who believed that a child’s gender identity, whether they feel like a boy or a girl, is determined at an early age by how the child is treated by his or her caregivers.

By choosing a gender for the child and modifying their genitals to match, Money and his followers believed the child would be spared the confusion and potential mental illness created by their medical condition.

Genital reconstruction quickly became the norm for intersex babies across the United States. It remains a widespread practice to this day.

One pediatrician talked to the Atlantic magazine about the practice. He said four of his patients who did not receive the surgery were mocked and ridiculed in school locker rooms after other children saw their genitals. He said some of their families had to move to other cities to due to the bullying that followed.

In the 1960s, Money applied his approach to a baby boy whose penis was mutilated in a circumcision accident. I discussed his unfortunate story in an earlier article. Money’s conclusion that the boy would be happiest if raised as a girl proved to be inaccurate. The boy, David Reimer, later told his father that he was uncomfortable being a girl. After his father told him what happened, he went back to living as male.

Money’s beliefs concerning gender identity proved equally detrimental to intersex children. Physicians and parents have chosen genders for intersex babies, and removed conflicting anatomy, that ended up being different than the gender their child ended up choosing for themselves.

These intersex individuals dislike that a part of their body, which they wish they still had, was taken from them without their consent.

An Alternate Approach

In 1993, several Intersex activists created the Intersex Society of North America to “build a world free of shame, secrecy and unwanted sexual surgeries.”

In addition to gender identity concerns, the group also said the surgeries carry risks to, “life, fertility, continence and sensation.”

Instead, they said surgeries shouldn’t be performed on intersex babies, unless there’s a medical reason, such as a urinary infection, to do so.  

If Intersex individuals later decide for themselves to have genital surgeries for non-medical reasons, ISNA believes they should be allowed to do so.

ISNA, does however, believe that parents, in consultation with doctors, should choose a gender for their child. Nonetheless, the organization stresses that this gender assignment is preliminary and that the child may wish to choose a different gender later on.

The group said Intersex children have higher rates of gender transition than the population as a whole and that parents should be aware of this possibility.

Some intersex infants grow up to identify as male, some as female. Others end up identifying as genderqueer. I explained what it means to be genderqueer and shared the experiences of several genderqueer people in an earlier article.

While ISNA closed its doors in 2008, it helped create a new organization, Accord Alliance, which continues to help support Intersex individuals and their families.

The legal battle

The controversy over genital reconstruction for Intersex infants is rooted deeply in gender, medicine and psychology.

And soon, hospitals may be taking into account the possible legal consequences of performing the surgeries as well.

The adoptive parents of an Intersex child have launched state and federal lawsuits against hospitals, doctors and officials at the South Carolina Department of Social Services. They contend the professionals they are suing authorized genital reconstruction surgery to be performed on the child they adopted.

The surgery made the child’s genitals appear female, even though he ended up identifying as a boy.

The Atlantic has a wonderful article on the lawsuit full of comments from parents, Intersex people, and doctors about the disputed practice. I couldn’t more highly recommend their reporting.

Conclusion

The scenario described at the beginning of this article is one faced by parents and medical professionals today. And it’s far from new. 

The debate over genital reconstruction surgery has taken place for decades. Variations on sex development have presumably existed as long as humans have been around. 

The fight for how parents, doctors and society should interact with Intersex people in the future continues to spark discussions on gender, identity and psychology today. 

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