Newswise — (Boston)—The healthcare of intersex individuals, who possess sex characteristics that do not align with traditional male or female categorizations, has gained significant media attention recently. This attention has been particularly heightened due to the rise in anti-transgender legislation, which often targets this community as well. Unfortunately, discrimination and mistreatment persist in both social and medical settings, largely driven by the stigma surrounding non-binary views of sex. Consequently, many intersex individuals endure feelings of isolation, secrecy, and shame, which can have enduring effects on their mental well-being.
A recent study conducted by researchers at Boston University Chobanian & Avedisian School of Medicine underscores the urgent necessity for a fundamental transformation in the way healthcare providers perceive intersex variations.
"Intersex individuals have suffered significant harm due to the healthcare system's adherence to the flawed notion of sex and gender as rigid binaries. A prominent example of this harm is the non-consensual 'normalizing' genital surgeries endured by many intersex infants and children, which have been proven to cause both physical and psychological damage," explains Kimberly Zayhowski, MS, CGC, assistant professor of obstetrics and gynecology and corresponding author of the study.
The researchers conducted and analyzed 15 interviews with members of the intersex community to explore their experiences with healthcare providers and gather insights on how their care could be enhanced. The study sheds light on specific areas of healthcare where intersex individuals have encountered medical trauma and emphasizes the importance of healthcare providers adopting a trauma-informed approach. Through these interviews, intersex individuals emphasized the necessity of normalizing intersex variations and incorporating comprehensive teachings on intersex history and medical care into medical curricula. This approach would alleviate the burden placed on patients to serve as their own medical experts and advocates.
According to the researchers, this study challenges the prevailing notion that sex is strictly confined to male and female categories, a perspective that contradicts scientific evidence but is often defended based on misrepresentations or misunderstandings of biology. Furthermore, the study underscores the significance of bodily autonomy and trauma-informed care, frameworks that bring benefits to everyone.
"This study has far-reaching implications for the medical care of individuals with intersex variations, also known as variations of sex characteristics. In some cases, physicians may use the term 'disorders of sex development' (DSD) to describe intersex variations, but this language has largely been rejected by the intersex community due to its pathologizing nature," explains Darius Haghighat, MS, CGC, assistant professor of obstetrics and gynecology at the School and first author of the study.
The researchers contend that the study participants have been let down by a medical system that discriminated against them, violated their rights, and provided misleading information. "To address these disparities, challenge abusive practices, and offer the care that the intersex community deserves, systemic change is of utmost importance," adds Haghighat.
These findings appear online in the journal Social Science and Medicine.
Funding for this project was provided by Boston University’s Genetic Counseling Program.
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