Advocacy, Gender Equality and JEDI

Intercepting Injustice: conversations on intersex bodily autonomy in midwifery care

ICM
29 June 2023

For the Pride Month edition of our Pass the Mic series, we are uplifting the experiences of the “I” in LGBTQIA+: the intersex community. We sat down with three intersex advocates from across the world to discuss the crucial role midwives can play in ensuring the sexual and reproductive health and rights of intersex people.  

Our speakers—Obioma Chukwuike (they/them), an intersex activist and Founder and Executive Director of Intersex Nigeria; Sean Saifa Wall (he/him), a Black queer intersex activist, rising scholar, and co-founder of the Intersex Justice Project; and Mani Bruce Mitchell (they/them), an intersex educator, mental health professional, and change agent in New Zealand—illuminated the ways in which midwives can support the bodily autonomy of intersex people. 

Read our overview of the key takeaways below and watch the full interviews here. 

Setting the stage 

Intersex is an umbrella term for unique variations in reproductive or sex anatomy, which may be identified at birth, puberty, or later in life. As defined by the UN, “Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Experts estimate that up to 1.7 percent of the population are born with intersex traits.” According to InterACT, there are over 30 medical terms for variations of intersex traits, all of which present differently. Given their essential role during pregnancy and birth, midwives can often be the first healthcare professionals who identify newborns with intersex variations. 

Sovereignty, stigma, and the state 

The sexual and reproductive health and rights of intersex people have often been relegated to the margins. The bodies of intersex people are shrouded in shame and stigma, leading to harmful medical interventions within healthcare systems that attempt to force them to fit sex and gender binaries, infringing upon their fundamental rights to self-determination and bodily autonomy.  

Obioma Chukwuike shared that sexual and reproductive health and rights are “a core background of intersex existence because that is where our challenge and our issues start . . . where the healthcare system has always told us that our body needs to be fixed to be accepted in society. And equally, society has also told us that if we do not conform to female or male, that means we’re going to be stigmatised and discriminated [against].”

Medical practitioners uphold this institutional harm by performing invasive and medically unnecessary surgeries on the bodies of infants and youth with intersex variations without their informed consent. Though these surgeries have enduring consequences for intersex people—including long-term medical complications and mental health impacts—governments have failed to address this harm or provide protection for intersex people. “There hasn’t been any sort of restitution, any sort of acknowledgement of how harmful these interventions are,” said Sean Saifa Wall. Obioma Chukwuike affirmed the need for justice and reparations for these violations.  

Intersex justice and midwifery 

Intersex justice recognises the harm from systems and structures that reinforce the sex binary and seeks to “reclaim dignity and sovereignty for people with intersex variations,” according to Sean Saifa Wall. It is intrinsically linked to reproductive justice, which upholds the right to bodily autonomy in sexuality and reproduction in the face of state intervention. Midwives, as providers of sexual and reproductive healthcare often in contexts where such care is subversive to the medical establishment, have the power to challenge medical authority and act as advocates for intersex bodily autonomy. 

In many settings globally, midwives are the responsible and accountable health professionals who conduct births and provide care for newborns, which means they can play a pivotal role in advocating for the bodily integrity of intersex children and fostering understanding for parents. Yet, as Obioma Chukwuike asked, “How informed are these midwives around intersex variations and the possibility of an intersex birth to happen? Are hospitals ensuring that midwives take responsibility to explain to intersex parents if they give birth to an intersex child?” And further, how are they conveying to parents that “this birth is not a disease or a disorder, instead it’s a natural occurrence?” Without midwives becoming educated and sharing this knowledge with parents, intersex infants will continue to face stigma and harm. This essential education must be included in pre-service training, but also in continuing education. 

“The role that the midwife can play is being the [newborn’s] advocate,” Mani Bruce Mitchell shared, “Okay, everybody, let’s slow down a bit and get some more information. So enabling the time for parents to grieve, if that’s the process they’re in. . . . Babies don’t die from having genitals that look different. It’s an issue for society.” 

Sean Saifa Wall called on midwives to “learn about the experiences of intersex adults in order to stop and interrupt these surgeries in [infancy]. So I’m about education, I’m about collective power, and using that collective power to actually challenge medical authority.” 

Envisioning inclusive care 

Ending the coercive medical interventions that intersex infants face is only one piece of the puzzle to ensure intersex bodily autonomy in midwifery care. Intersex adults require individualised and specialised sexual and reproductive healthcare. By understanding these needs and their experiences, midwives can develop a model of care that caters to people with intersex variations and allows them to explore their reproductive options in a safe space. 

“A lot of the energy is focused at the moment on stopping surgeries, but [what] if we step back and think okay, what does a really good model of care look like?” Mani Bruce Mitchell asked. They shared that this would mean midwives are informed about the different intersex variations and provide patient-centred, trauma-informed care that respects the reality, bodily autonomy, and needs of intersex people seeking midwifery care. 

One way that midwives can work to develop inclusive care is by building partnerships between their midwives’ associations and local intersex organisations for further education and advocacy. You can find a list of organisations by country here. 

Watch the interviews