“I never understood why people called it their ‘private parts’, because mine was never private.”
Dimakatso Sebidi was born intersex and spent the first six years of her life in hospital undergoing medically unnecessary surgical procedures she describes as “very painful; too, too painful”.
Sebidi is just one of the many intersex people across South Africa who have been — and continue to be — subjected to intersex genital mutilation (IGM).
The Intersex Society of North America defines intersex as “a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.
“A person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types — for example, a girl may be born with a noticeably large clitoris or lacking a vaginal opening, or a boy may be born with a notably small penis or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.”
Intersex International, a global network of intersex organisations, defines intersex genital mutilation as “conducted on newborn babies when their external genitals do not look ‘normal’ enough to pass unambiguously as male or female.
Surgery is carried out upon the genitals of newborn babies, infants and children for cultural or religious reasons [where] medical needs are also cited as a justification for the surgery, but the evidence of actual need is slim at best.”
The practice has been condemned by the United Nations rapporteur on torture, the World Health Organisation and the United Nations committee on the rights of children.
Johannesburg-based paediatric endocrinologist Professor David Segal says it is estimated that one in 1 000 people in South Africa are born intersex.
South Africa takes the moral lead
In its briefing to the UN’s children’s rights committee last month, South Africa took an unprecedented step when the department of social development conceded that government was aware of the need to stop the practice of intersex genital mutilation.
The move won the approval of intersex rights activists globally, who noted that “South Africa was the very first state to officially recognise the essentially harmful practices on intersex children at the UN”.
In his address to the children’s rights committee at the UN, Zane Dangor, adviser to Social Development Minister Bathabile Dlamini, said: “As a government, we do recognise that being intersex is a sexual characteristic and not a medical condition. But at the same time we recognise that there are still practices where surgeries are being performed on newborns and young children, which are harmful.
So we are now beginning a process in its early stages to acknowledging that such surgeries performed at a very young stage are harmful and that it needs to stop.”
Speaking to the Mail & Guardian ahead of this year’s International Intersex Awareness Day on October 26, Dangor reiterated the government’s commitment to stopping IGM.
“Intersex genital mutilation is of major concern to our department. What is even more worrying is that we only picked this up as a major concern just prior to our engagement with the [children’s rights] committee, when the fact that intersex children are being subjected to unnecessary medical procedures was highlighted to us,” he says.
It was largely as a result of a report submitted by local intersex activists that the department’s attention was drawn to the practice. The report, titled The Experiences of Transgender and Intersex Children in South Africa, was put together by Iranti-org, Gender DynamiX, the Aids and Rights Alliance for Southern Africa and the Legal Resources Centre.
Charlene May, an attorney with the Legal Resources Centre, says cases of intersex genital mutilation come to the organisation largely through other nongovernmental organisations working specifically with intersex people.
May says: “Concerns we have around this have been brought about through our work with NGOs working with affected people and their parents. What we have noticed is that, very often, people only realise later in their lives that surgeries had been done on them. One of our clients, for example, has very little recollection of this because it happened so early in her life and she only found out in adulthood, when she discovered she could not have children.”
‘Blend of art and science’
Segal concedes that it’s a difficult and nuanced area of medicine with few definitive answers. “The investigation and treatment is always going to be somewhat subjective and a blend of art and science.”
But intersex infants and children “should only really have early surgery to correct abnormalities in the genito-urinary tract [which contains organs concerned with reproduction and the production and excretion of urine] that could lead to infections and obstructions”.
According to Segal, “there are absolutely no statistics” on the number of such surgeries performed locally. He adds that estimating a figure is difficult because “the management of patients is different, depending on the level of expertise of the health professionals”.
“There are many old-school surgeons who immediately opt for performing these kinds of cosmetic surgery,” he says.
Activist Joshua Sehoole, the regional human rights officer for queer media advocacy organisation Iranti-org, says at the heart of the issue are the “so-called ‘normalising’ procedures that are meant purely to make the child’s genitalia conform more aesthetically to societal and medical perceptions of what male and female genitalia should look like”.
“These surgeries are irreversible and have consequences for the child’s health and reproductive rights. These ‘normalising’ procedures should only happen with the individual’s full, free, informed consent. It is essential that the child’s rights to bodily integrity, autonomy and self-determination are fully respected,” he says.
Sehoole adds that because there is often the need for successive surgeries to be conducted, “the child grows up in an environment in which he or she is constantly pathologised”.
- READ MORE: Cast aside at birth for being intersex
He says his organisation does, however, support instances in which there is a clear need for surgery, such as when a child’s urethra doesn’t extend to the outside.
According to the UN, “[IGM] procedures are frequently justified on the basis of cultural and gender norms and discriminatory beliefs about intersex people and their integration into society.
“Many intersex adults exposed to such surgery as children emphasise the shame and stigma linked to attempts to erase their intersex traits, as well as significant physical and mental suffering, including as a result of extensive and painful scarring. Many also feel that they were forced into sex and gender categories that do not fit them.”
Surgery before the age of consent
One IGM procedure that often has devastating effects is hypospadias “repair” surgery. Hypospadias is a congenital condition in males where the opening of the urethra is on the underside of the penis.
A report in the 2015 Journal of Sex Research titled Should Surgery for Hypospadias Be Performed Before an Age of Consent? notes that “many males who undergo hypospadias surgery require one or more follow-up surgeries to address complications arising from the initial surgeries, and this may be experienced as distressing”.
The report goes on to say: “Hypospadias surgery may also result in unsatisfactory cosmetic outcomes and a penis that is atypical in appearance, and this may also be a source of psychosocial distress for many males who undergo the surgery.
“Some males who undergo surgery for their hypospadias during early childhood may also experience feelings of resentment towards their parents for choosing this surgery for them before they could participate in the decision-making process, and thus require assistance in managing these feelings.”
This, says the UN, is why, “given their irreversible nature and impact on physical integrity and autonomy, such medically unnecessary, unsolicited surgery or treatment should be prohibited”.
May adds that parents of intersex children often did not disclose the fact that their intersex children had been operated on. “Most often, people are just told that they had a certain medical condition that needed to be treated through surgery.”
Sebidi found out at the age of 21 that she’d been operated on because she was born intersex. “Up until then, I had been told that I was there [in hospital] because of a kidney condition,” she laughs, wryly.
Her father believes that “the advice the doctors gave us was God’s will because she is still alive and healthy”.
The problem is further compounded by medical practitioners who insist on performing “corrective” procedures, often failing to provide parents of intersex children with enough information, says Sehoole.
Intersex activist Nthabiseng Mokoena’s experience was entirely different to that of Sebidi. “When I was born, the advice my mother got from the doctors was surgery. But I had a wise mother who said ‘no’.”
Mokoena, who identifies as gender-queer (and therefore prefers the pronouns they, them and their), says that, although they thought of themselves as “not very normal” because the surgeries had not been done, they eventually came to appreciate the decision their mother took.
‘Not having surgery was a blessing’
“When I was about 19 or 20 years old, I started interacting with other intersex people through my work as an activist. When I heard their stories of having undergone these surgical procedures, I started seeing it as a blessing that those surgeries weren’t performed on me.”
Although they welcome the government’s decision to look into ways of stopping intersex genital mutilation, Mokoena stresses that the “government must engage with intersex people and their parents first, because this is about our lives and our bodies”.
May concurs: “Government would need to start by engaging with people who have had these procedures done without their consent.
“We need to make sure that if someone wants to undertake a surgical procedure, it is of utmost importance that the person gives their informed consent. In these situations, the decision needs to be left up to the person [as to] what gender or sex they choose to be. At the moment, the right to self-identification is being taken away from the infant at birth by medical professionals,” she says.
The issue is complex and requires a multisectoral approach, says Karabo Ozah, an attorney at the University of Pretoria’s Centre for Child Law.
“There is a need for research on this issue. First, we need to know the statistics and the practices that are prevalent in the country before we can consider legislative provisions to address the matter.
“In addition to the laws, there would be a need for educative approaches so as to enable parents to know that there are other options than surgery at birth. Work also needs to be done to address the stigma that families and children may often be faced with in communities.”
Sehoole is putting his faith in the government steering such an approach.
“We are hoping that, within the next year, we’ll see some real movement on the side of government to address these really gross human rights violations.”
Dangor says that while the government has yet to set a date for initial engagement, it hopes to kick-start the process over the next couple of months.
Until the practice of intersex genital mutilation is ended, however, there will undoubtedly be many like Sebidi who will say something like: “I spent years of my life in hospital. Years. And you know who spends that long in hospital? People who are sick, that’s who. But me, I’m not sick. I was never sick.”