Society of Bioethics and Medicine
The Intersex Experience
Written By - Elizabeth Badalov, Edited By- Jacquelyn Tang
As more research sheds light on the experiences of marginalized or underrepresented populations within the healthcare system, there is a need to highlight the voices of LGBTQ+ and specifically intersex individuals. Intersex people are not rare, but are widely misunderstood, and consequently face heightened stigma and unique barriers in healthcare and in their personal lives. While we are generally taught that sex is dimorphic—male or female—intersex individuals are born with “unique variations in reproductive or sex anatomy. Variations may appear in a person’s chromosomes, genitals, or internal organs like testes or ovaries,” thereby defying the standard male/female sex binary.
The social stigma against a person who does not fit into either the “male” or “female” category can have disastrous consequences that begin in infancy and are a burden for life. Prior to the 1960s, intersex children were reared in accordance with whichever gender norm parents and doctors deemed appropriate at birth. Although they sometimes experienced harassment or discrimination, many matured into well-adjusted adults living normal lives.2 With emerging medical technologies, however, emerged the perceived need to interfere with the development of these children. Beyond the 1960s, doctors and medical professionals began to recommend surgical solutions to the “problem” of intersex traits. These irreversible surgeries are advised to take place “between 12 and 24 months of age,” to be conducted on a non-consenting subject who might not ever be informed about the procedure.
Plainly, these non-necessary, entirely cosmetic procedures are an ethical violation. These surgeries perpetuate the belief that human beings must be exclusively male or female, at the expense of the emotional and physical well-being of intersex individuals. Such procedures are often disabling to the subject child or infant, as they often result in “sterilization, inability to orgasm or experience genital sensation, chronic infections…and post-traumatic stress disorder.”
An estimated 1.7% of people are intersex, and about 1 in 2,000 children will undergo a “normalizing” genital surgery which they will spend the remainder of their lives recovering from, forced into a lifetime of hormone replacement therapy, or struggling with their mental health and self-image.
With growing sensitivity and a more widespread awareness of the adverse effects of such surgeries, an increasing number of doctors are opposed to conducting these surgeries on intersex patients. Today, intersex children and their families are able to consult with a team of specialists and have the opportunity to receive much higher quality care. Despite this, “the field remains fraught with uneven, inadequate, and piecemeal standards of care—and broad disagreements among practitioners over the human rights of their intersex patients” and some surgeons continue to perform normalizing surgeries on subjects under a year old.3 Unfortunately, the persistence of these operations is strongly rooted in socio-cultural norms, such as the parents’ desire for the child to grow up “normal,” or the stigma surrounding what “normal” really is. The desire to conform to these socio-cultural standards is often respected more than the autonomy of an intersex child.
Due to the difficult relationship that intersex individuals already have with the healthcare system, their history of trauma might make it more difficult to seek medical care for any number of reasons.1 As such, it is important to consider the effect of the COVID-19 pandemic and its implications for intersex people. This impact can be economic, medical, or emotional, as the pandemic has limited access to medical resources and social support. In addition, the pandemic could serve to prolong the lockdown of an already-isolated segment of the population with increased vulnerability.
Now more than ever it is important to work towards overriding social norms that serve to further isolate intersex people. The classification of gender as binary is harmful to many communities, but it has a strong deleterious effect on those whose bodies are permanently changed so that they may better conform to our social expectations. As more research is being conducted to understand the intersex experience, public awareness has led to positive effects: in the United Kingdom, a report on the intersex experience has influenced the National Health Service “to propose withdrawing public funding for childhood surgeries carried out for gender-normalizing purposes.” Hopefully, similar studies and measures can start to see success globally as we work towards a society that values individuals exactly as they are.
1. Orr CE. COVID-19: Intersex and “Essential” Medical Care. Impact Ethics 2020; Community, COVID-19, Law & Policy, LGBTQI, Queer Studies, Sexual Health, Vulnerability.
2. “I Want to Be Like Nature Made Me”. Human Rights Watch 2017. 3. Savage R. Isolation for intersex people: coronavirus revives trauma. Thomas Reuters Foundation 2020.
4. Henderson E. Researchers perform new study on intersex experience. News Medical 2021; Life Sciences.