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A South Carolina judge has just made a historic ruling in a critical court case fighting for the rights of intersex children, allowing a groundbreaking case accusing the state of South Carolina of violating a child's Constitutional rights by subjecting him to medically unnecessary surgeries to proceed. Children born intersex, also referred to as Disorders of Sexual Development, have genitals and endocrine systems that don't conform with binary sex assignments; they may have a mixture of genitals, or mixture of chromosomes that doesn't adhere to the XX/XY format many people assume is "normal."
Historically, the treatment for DSD was to surgically assign a sex at birth and lie to the child about it, but today, we have a more nuanced approach that involves allowing intersex kids to choose their own gender and sexual identities as they mature.
That wasn't the case for eight-year-old M.C., though, who was among the one in approximately 20,000 kids who are born intersex. Social workers, as well as doctors, decided to remove his penis and extant testicle at just sixteen months, performing forced sex assignment surgery to turn him into a girl. The decision they made for him turned out to be the wrong one. M.C. identifies as male and lives as male, and his parents, assisted by the Southern Poverty Law Center and the Advocates for Informed Choice, are fighting for his rights, and those of other intersex children.
In the case they filed last year against the State of South Carolina, they argued the state had violated M.C.'s Constitutional rights, and now, a judge has ruled that the case can move forward. This is huge and exciting news for M.C., who has suffered irreparable physical and psychological harm as a result of the forced surgery, and for intersex kids in general. If the suit is successful, it will set a clear precedent: intersex children have bodily autonomy, and making critical medical decisions for them at such a young age is a violation of their rights.
The Accord Alliance, a grouping of medical and legal professionals along with intersex advocates, has detailed guidelines on the social and clinical treatment recommendations for DSD. The guidelines include a wide scope of issues, but critically assert that it's time for a departure from the historic condition of "normalizing surgery." Instead, intersex children should be allowed to grow up with their genitals intact, so they can decide if they want surgery at all, and have the widest array of options available.
Historically, people believed that it was possible to "naturalize" intersex children into a binary gender. Doctors would evaluate patients and decide which gender would be most suitable, working from there in a series of forcible surgeries. Parents weren't provided with very much information about the condition and operated from a lack of knowledge and fear. These surgeries could cause problems with sexual function and fertility, in addition to arbitrarily assigning a sex and gender that might not match with the patient's actual sex and gender identity.
Now, thinking on this issue is very different. The focus is on empowering parents to raise their children compassionately and with excellent access to pediatric care so their kids can make the choice that's right for them when they're old enough to make decisions. Teaching parents about their options includes acceptance for DSD, and the fact that for some people, being intersex isn't a disorder at all -- it's just part of their identity.
Their guidelines focus heavily on removing stigma, not allowing parental fear and unfamiliarity to rule treatment decisions, and getting children the best care possible, targeted to their individual needs. This is a huge leap from the era of shame, fear, and secrecy that surrounded DSD in the 1950s, when the original treatment guidelines were developed.
Some intersex people may need closer medical monitoring or health screening to address health concerns, but absent any compelling medical reason, guidelines from intersex advocates recommend waiting on surgery. The American Academy of Pediatrics feels differently, still recommending sex assignment surgery, but advocates are working to change this, bringing the AAP's thinking more in line with modern standards. Sensibilities about sex, gender, and bodily autonomy are changing, and the medical world needs to change with them.
In the case of M.C., his foster parents (now his adoptive parents) were advised to consent to the surgery, and they weren't given information about its ramifications, current treatment recommendations, or alternative options. Critically, they weren't told that none of these procedures were medically necessary.
As he grew older, the grave injustice done by his surgery became more readily apparent. Furious, his parents decided to take the case to court to fight for justice for M.C. and put a stop to this outdated practice. They argue that children in the care of the State are supposed to have advocates looking out for their wellbeing, and that M.C. was not well served by the state, Medical University of South Carolina, or the Greenville Hospital System.
The fact that this is the first case of its kind in the United States makes it critically important. After the state's attempt at getting it dismissed, U.S. District Judge David C. Norton ruled that it will move forward, allowing M.C.'s advocates to have their day in court, and to make a huge mark on the legal landscape. If their suit is successful, it could signal a radical change in the way the United States approaches the treatment of intersex children.
For M.C., the die is cast, and he will have to undergo additional complex surgeries if he decides he wants gender confirmation surgery. For others, though, this case could make a huge difference, empowering them with the ability to make decisions about their own bodies as they grow older.