[vc_row][vc_column][vc_column_text css=”.vc_custom_1731959260366{margin-bottom: 0px !important;}”]This year, in the course of my prenatal and birth support work, I had the occasion to read The Consensus Statement on the Management of Intersex Disorders published in 2006. Now eighteen years old, the Consensus statement is still used by medical teams to guide ethical decision-making regarding the medical care of intersex newborns, infants, and young children.
Given this, doulas should be familiar with this Statement and ready to provide informational support to parents that is free from stigma and based on current evidence, including the stories of intersex adults. There are numerous concerns with this statement from a health equity and intersectional social determinants of health perspective. Many issues arise from how dated the document is. There are four problem areas with this statement: 1) Guidance on Terminology, 2) Guidance on gender assignment, and 3) Lived experience of intersex people not valued as evidence 4) The Kenneth Zucker controversy.
Guidance on Terminology
The term “Intersex” is used in the article title, however, in the article body it lists “intersex” as potentially pejorative alongside several outdated and offensive terms. It then goes on to advise providers that “Disorders of Sexual Development” is the preferred term. This differs from the position of advocacy groups by and for intersex people, who counsel their audience that “intersex” is the term they prefer.
Intersex conditions are numerous and diverse. Framing all of them as disorders discounts the reality that many intersex people are able to have sexual relationships and children without ever needing medical intervention. The universal use of the term “disorder” insinuates that all intersex people have something “wrong” with them that needs to be corrected. This is simply untrue. Some intersex conditions can cause issues with the ability to eliminate urine, in which case this must be treated as soon after birth as possible. Other conditions may impact fertility, and sexual functioning, or increase the likelihood of having cancer later in life. None of these issues need to be treated during the newborn phase and parents should be encouraged to focus on bonding with their baby. The blanket use of the term “disorder” and the fear it is apt to inspire in parents does not support the measured and stigma-free approach to decision-making that is best here.
Guidance on Gender Assignment
Unsurprisingly given the statement’s age, concepts like non-binary identity and gender-open parenting are not entertained. The Statement positions it as a given that parents will be deeply disturbed if they are not able to assign a gender to their baby at birth. It promotes making a gender assignment as quickly as possible after birth as the way to alleviate parental anxiety. Much of the pressure to diagnose and treat early that it advocates is rooted in the belief that parents need guidance on how to assign gender. The statement then offers guidance on what gender should be assigned to people with certain conditions.
The idea that each individual is the most qualified person to identify their gender is never considered. According to the statement assigning gender is strictly the purview of the parents, in this case, guided by medical experts.
Earlier this year, I wrote about the concept of “gender-open parenting” and how and why it is enacted. This approach to parenting is guided by the belief that each individual has the right to assert and express their gender as free from external pressure as possible. Gender-open parenting is a wonderful option for parents of an intersex child to consider. Gender formation and expression happen in early childhood. Anecdotally, most children who have been raised gender open have self-identified their gender by the time grade one is over. At this age, most medical complications will not have arisen, and most medical interventions are still on the table. From the standpoint of promoting bodily autonomy and informed consent, parents should be encouraged to defer decisions about gender assignment and non-urgent medical intervention until the child can be a part of those conversations.
The Lived Experiences of Intersex People
More recent research on intersex people has found that many intersex adults have extensive medical trauma from repeated examinations and in some cases multiple surgeries during childhood. Moreover, many intersex adults attest that the surgeries they endured were cosmetically motivated, medically unnecessary, and in some cases harmful to their sexual functioning and/or fertility. Still, other intersex people whose parents forewent medical interventions state that they are happy, functional adults.
This qualitative evidence from intersex adults needs to be viewed as legitimate evidence regarding how intersex people should be cared for in childhood. I’m not sure how much qualitative evidence from intersex adults existed in 2006, but if there was any, it wasn’t included in the statement.
The statement does use statistical evidence drawn from intersex adults, using the gender identity held by the majority of individuals with specific conditions to justify assigning that gender to all infants with that condition. The Statement notes that gender may need to be reassigned if the initial assignment proves wrong. Again, the experts are to make this reassignment. The concept of the individual deciding their gender for themselves is not mentioned.
Throughout the document, the intersex child is discussed as a passive bystander to their health care decision-making. This is not aligned with contemporary approaches and attitudes regarding the importance of client-centred and directed care, informed consent, and bodily autonomy that should be enacted in every part of the healthcare system.
Kenneth Zucker Controversy
The Statement is a consensus among international experts on the diagnosis and management of intersex conditions. The Canadian expert who contributed to the statement is Dr. Kenneth Zucker. His name will ring a bell for many members of the Toronto 2SLGBTQ community, especially trans people, parents of trans kids, and their allies. For many years, Dr. Zucker was the director of the Gender Identity Clinic at the Centre for Addiction and Mental Health (CAMH). Many trans youth and their parents have accused Dr. Zucker of harming them by gaslighting them about their gender identity and trying to convince kids who were certain that they were trans that they were wrong and that in his expert opinion, they were cisgender and should focus on being comfortable with the gender they were assigned. Following significant and sustained outcry from the 2SLGBTQ community alleging conversion therapy, Dr. Zucker was relieved of his duties at CAMH, and the Clinic was closed. He defended his practices, appealed this decision, and was eventually offered an apology and a settlement by CAMH.
The consensus statement manifests many of the concerns that were raised about Dr. Zucker’s ideology. They included:
- The individual is not considered a valid authority on their own lived experiences and identity.
- Conforming to the gender you are assigned is the ideal outcome.
- Non-binary, genderqueer, agender, and genderfluid identities are not legitimized or even considered.
- Everyone must eventually conform to the box of “male” or “female”.
- Gender is something that is assigned to you, not something that you define for yourself.
- Having a child that can’t be easily slotted into one of those boxes is “disturbing” for parents.
On this platform, I have talked about how these beliefs are harmful to trans people. They’re harmful to intersex people too, especially in infancy. The pressure to rush to gender assignment, potentially reinforcing the assignment with surgical procedures, is driven by these beliefs. Intersex people are being physically and psychologically harmed as a result.
~
For many parents, their child being diagnosed with an intersex condition will be the first time they have given any thought to the existence of intersex people. This is through no fault of their own. The gender binary is the dominant perception of reality. The lives of intersex people are shrouded in stigma and silence. As such, parents are highly vulnerable to accepting what they are told by medical experts at face value. The Consensus Statement is an excellent example of how medical guidance is not always objective. Our interpretation of “facts” is always mediated by our preexisting beliefs.
Doulas have a vital role to play in helping parents understand where medical recommendations are coming from and unpacking the beliefs on which seemingly evidence-based recommendations rest. The B.R.A.I.N (Benefits, Risks, Alternatives, Information/Intuition, (do something) Now/Never/Not Now) model of decision-making is an excellent approach to apply. We can also reduce stigma by sharing stories of positive outcomes for intersex individuals. Role models and other resources can be found at Intersex Canada or InterAct: Advocates for Intersex Youth.
My social media post from October 28, 2022, offers guidance on specific questions parents should ask if their child is diagnosed with an intersex condition. A huge part of the magic of this work is the power to improve lives by being at the ready with unbiased, affirming, open-minded information and compassionate support. If we lead with compassion and inclusiveness, we can alleviate the medical harms currently happening to intersex babies and children.
Keira Grant (she/her) Inclusion and Engagement Lead – Racialized Communities
Keira brings a wealth of experience to the Online Community Moderator role. She is a Queer, Black woman with a twenty-year track record in Equity, Diversity, and Inclusion (EDI) education, projects, and community building initiatives.[/vc_column_text][/vc_column][/vc_row]
