DSD, intersexuality and the law in the U.S. and around the world
WASHINGTON, February 7, 2014—A groundbreaking lawsuit was filed in 2013 by the adoptive parents of an intersex child, identified as M.C., against the South Carolina Department of Social Services, Greenville Hospital System, and the Medical University of South Carolina. The suit alleged that the defendants consented to and performed medically unnecessary sex-assignment surgery when M.C. was 16 months old and in foster care.
Previously known as hermaphroditism, M.C.’s condition is described as intersex, where an individual’s reproductive system and or genitalia does not fit the general definitions of male or female.
An estimated 2,000 babies are born “intersex” each year, referring to a set of over 60 different conditions that fall under the diagnosis of “DSD” (Differences/Disorders of Sex Development). DSD occurs more often than Down syndrome or cystic fibrosis.
The suit alleges that the medically unnecessary surgery—to make M.C. appear female—was a violation of M.C.’s constitutional rights. The complaint also alleges that the surgery was the result of medical malpractice, gross negligence and a violation of M.C.’s right to privacy.
According to the complaint, the child had both male and female reproductive organs at birth, as well as “ambiguous genitals.” M.C.’s doctors identified him as male in both the labor and delivery summary and the required newborn identification form.
M.C. was later diagnosed with ovotesticular DSD, also known as “true hermaphroditism,” displaying both ovarian and testicular tissue. There are no medical standards to determine the gender of an infant with M.C.’s condition, especially at a young age.
Doctors made the decision to perform surgery that “radically restructure[d] his reproductive organs in order to make his body look female,” despite initially determining that M.C. could be raised as either a boy or girl. With the consent of the South Carolina Department of Social Services, doctors removed healthy genital tissue, potentially sterilizing and eliminating sexual function when the toddler was 16 months old.
The surgery was performed before M.C. was adopted by Pam and Mark Crawford, a psychiatrist and stay-at-home father. While the surgery was performed to identify M.C. with a female, from a young age he began to identify as male.
Despite initially being raised as a girl in accordance with the surgery, M.C. is currently living as a boy. His parents, pediatrician, school, and friends are all supporting the eight-year-old’s decision to live as a male.
Medical procedures like the one undergone by M.C. have been performed on intersex infants in the U.S. since the 1950s. However, the ethics of this practice have been questioned in recent years.
In cases where children are born with mixed or ambiguous markers of biological sex (chromosomes, gonads, internal reproductive system, genitalia), current medical authority supports assigning a child a gender but not performing surgery until the child is old enough for gender identity to emerge and the child and guardians can make the appropriate decisions regarding surgery. This also includes the choice whether to have any surgery at all, since surgery involves the risk of sterilization and elimination of sexual function.
The complaint alleges that at 16 months, M.C.’s gender identity had not emerged and doctors knew that in cases like M.C.’s there was a significant risk that the patient would ultimately reject the gender assigned. Indeed, one of the doctors named in the complaint had previously written a medical journal article stating that “carrying out a feminizing-genioplasty on an infant who might eventually identify herself as a boy would be catastrophic.”
Despite now identifying as a boy, the surgery is irreversible and M.C. will never be able to reproduce as a male. His parents say they brought the suit in the hopes that this doesn’t happen to other intersex children.
This case is important on several levels. For one thing, it brings attention to a condition that gets very little attention aside from the sensationalism surrounding the occasional celebrity rumors or the misunderstanding of intersex athletes like South African Olympic runner Caster Semenya.
“These are not storylines that serve to accurately define what intersex is, discuss why intersex is such a highly-charged issue, and help people to understand that we’re neither unrelatable weirdos, nor objects of fascination whose bodies and identities are available for public consumption,” writes Claudia, an intersex commentator. “We’re just people, who happen to be intersex.”
Moreover, this case questions who gets to decide what kind of procedures can be performed on intersex children before they are old enough to consent to a life-altering procedure that is not medically necessary.
In general, parents and guardians have the power to consent on behalf of a child concerning necessary medical procedures. However, this case differentiates between a life-saving or medically necessary procedure and one that is cosmetic and could have catastrophic physical, psychological and emotional implications for the individual in the future.
Germany made news in late 2013 when it became the first European country to legally recognize intersex children. Australia, India, Pakistan and Nepal already have some form of legal recognition of a third gender on legal and official documents.
The new German law, intended to ease the pressure on parents and prevent hasty decisions regarding newborn sex-assignment surgery, allows parents to leave gender blank on birth certificates.
“I think any measure, legal or otherwise, granting a parent of any child more time to carefully consider how best to honor and preserve their child’s emotional and physical health is encouraging,” wrote Jim Bruce, a 36-year-old writer and intersex individual, to ABC News.
However, many activists say the German law does not go far enough. According to a 2011 report filed with the European Commission, intersex individuals face unique and especially complex barriers and discrimination in their legal, social and medical lives.
Many claim that this law does not address the most pressing problems faced by the intersex community, namely surgery on infants and discrimination.
“That we forbid cosmetic genital surgeries for newborns, that is our first demand,” Lucie Veith, leader of the Association of Intersexed People in Germany, said to AFP.
The group, which supports a ban on sex-assignment surgery until the age of 16, said that while the law is a step in the right direction, it is unlikely to put an end to surgery on infants.
Others believe the law will invite further discrimination of intersex individuals.
“We think a better process is assigning male or female sex, then waiting,” Anne Tamar-Mattis, executive director for California-based legal group Advocates for Informed Choice said to ABC News. “Adults should be able to make their own decisions about legal gender. German law is about assigning it at birth. That is not a battle young children should have to take up at this point. When they are grown, they can make decisions about their own bodies.”
Others fear that the law is creating and assigning a label without providing adequate antidiscrimination legislation that will protect these individuals and educate the community.
Other activists recognize that while it is commendable that Germany is at least attempting to address intersex issues, the result of this new law remains to be seen.
“Whilst this law may be seen to have been enacted from the best of intentions, it doesn’t really address the deeply embedded medical protocols that shadow many of our lives. It doesn’t change how those are engaged at all, but it does give space for parents to learn,” a UK intersex advocate said told the writer in November 2013. “On the other side of the coin, this law change lays a platform for having an open and honest debate about what happens to us, and issues of self determination and bodily integrity. It gives a greater urgency for the need to educate parents, and wider society about our existence.”