Historical Healthcare Treatment of Intersex Folx

While you may be reading this thinking, ‘I don’t know anyone who is Intersex,’ or ‘I’ve never treated a patient who is Intersex’ you might be surprised to find that 1.7% to 4% of people are Intersex, according to Zeeman and Aranda (2020) in their 2020 article A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance.

According to Haghighat, et. al (2023) in their article Intersex people's perspectives on affirming healthcare practices: A qualitative study, “Intersex people have variations in their sex characteristics that do not exclusively fall within binary definitions of male and female.” These variations can be chromosomal, hormonal, gonadal, or anatomical (Cochetti, Monro, Vecchietti, & Yeadon-Lee [2020] and Haghighat, et. al [2023]).

Intersex folx are often seen by multiple healthcare providers throughout their lifetime, including pelvic rehab practitioners. However, one thing that most don’t know, is that historically; Intersex folx have been very mistreated and pathologized by healthcare workers. Many Intersex folx have been given non-medically necessary and non-consensual surgical procedures and hormone treatments over the years; and unfortunately, some of these practices are still occurring around the world even today. Intersex folx have also been treated by providers with inaccurate education and inadequate training needed to provide care to Intersex populations, leaving many patients who are Intersex being the ones who educate their own medical providers about their variations and healthcare needs. Tiffany Jones (2018) also mentions in her article Intersex Studies: A Systematic Review of International Health Literature that even language in the medical literature is inaccurate and inadequate when describing Intersex populations (Jones, 2018).

This maltreatment and poor education on the healthcare providers' part, as well as dissemination of inaccurate and pathologizing medical information; can lead to copious trauma for patients and a lack of trust in healthcare workers and healthcare systems. In Haghighat, et. al.’s article, they state that “depathologization of intersex variations and comprehensive teachings of intersex history and medical care must be incorporated into medical curricula to mitigate experiences of medical trauma and to relieve the burden placed on patients to be their own medical experts and advocates. Systemic change is needed for the normalization and demedicalization of intersex variations and for the medical empowerment of the intersex community.”

In my course Intersex Patients: Rehab and Inclusive Care, next scheduled for November 16, 2024, healthcare providers will learn about the healthcare needs that are unique to Intersex folx and about how to provide trauma-informed, evidence-based evaluations, treatments, and plans of care for patients who are Intersex. Students will also learn how to provide Intersex-Affirming Healthcare and how to be better allies in healthcare and in life to Intersex folx so that we can help put a stop to these non-medically necessary and non-consensual medical procedures, empower patients who are Intersex to have a say in their healthcare practices, to help stop the pathologization and further marginalization of Intersex people, and to educate other people (not just healthcare providers) about how to be allies to Intersex folx everywhere.

Resources:

• Intersex Studies: A Systematic Review of International Health Literature. Jones, T. (2018). Intersex Studies: A Systematic Review of International Health Literature. Sage Open, 8(2).https://doi.org/10.1177/2158244017745577
• Intersex people's perspectives on affirming healthcare practices: A qualitative study. Darius Haghighat, Tala Berro, Lillian Torrey Sosa, Kayla Horowitz, Bria Brown-King, Kimberly Zayhowski. Intersex people's perspectives on affirming healthcare practices: A qualitative study. Social Science & Medicine, Vol 329, 2023 116047, ISSN 0277-9536, https://doi.org/10.1016/j.socscimed.2023.116047.
• A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance. Zeeman L, Aranda K. A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance. Int J Environ Res Public Health. 2020 Sep 8;17(18):6533. doi: 10.3390/ijerph17186533. PMID: 32911732; PMCID: PMC7559554.
• https://www.tandfonline.com/doi/full/10.1080/13691058.2020.1825815#abstract/. Cochetti, D., Munro, S., Vecchietti, V., & Yeadon-Lee, T. (2020, November 25). 500-515. doi: 10.1080/13691058.

1. Gain foundational knowledge. Not everyone with a healthcare degree arrived there by way of being a biology major. Accordingly, many people in the health field are simply unaware of how many wonderful people in this world exist outside the XY and XX binary. Did you know there are also people with just one X chromosome per cell? Some people are even XXYY or XXY! Also, some people may have chromosomes that fit binary expectations; however, they have generic variations that result in different bodily responses to sex hormones. This might, for example, lead to someone with XY chromosomes presenting with testes in the abdomen while also having breasts and a vulva. By taking this course, you will be able to appreciate the wide range of what it means to be a human. One of my all-time favorite podcast series, Gonads by RadioLab, is a great starting point for engaging with these concepts prior to the course: https://radiolab.org/series/radiolab-presents-gonads/
2. Connect with your clients better. After taking this class, I learned new ways to bring up the topic of what it means to be intersex and how that relates to pelvic rehabilitation. I went from not being aware of any of my current clients being intersex, to finding out two were intersex within a few days of completing this course! This class will help you to build better rapport with all of your clients, whether they are intersex or not.
3. Get practical tips on making your practice more inclusive. One of the big takeaways for me from this course was how to update my intake forms. I had already accounted for gender differences on my documents, but not sex differences. Through this course, I got great suggestions, such as including an organ inventory, rather than simply the three choices of male/female/intersex. The organ inventory is a great example of making a form more inclusive because I would want to know if a non-intersex (also called endosex) cisgender man didn't have, for instance, testicles just as much as I'd want to be prepared to support an intersex client with variations in anatomical structures. Here is a link to ideas for making your forms more intersex-friendly: https://www.queeringmedicine.com/resources/intake-form-guidance-for-providers.

AUTHOR BIO:
Molly O’Brien-Horn, PT DPT, CLT

Molly O’Brien-Horn graduated from Rutgers School of Biomedical & Health Sciences (formerly the University of Medicine & Dentistry of New Jersey) with her Doctor of Physical Therapy degree. She is a Pelvic Health Physical Therapist, a Certified Lymphedema Therapist, and an LSVT BIG Parkinson’s Disease Certified Therapist. She is also a sex counselor, a trained childbirth doula, and a trained postpartum doula. Molly is a member of the American Physical Therapy Association Academy of Pelvic Health Physical Therapy and is also a Teaching Assistant with the Herman & Wallace Pelvic Rehabilitation Institute.

Molly is passionate about providing accessible healthcare to pelvic health patients of all age ranges, all gender-identities, all sexualities, all body variations, and all ability levels. She also has experience in a variety of physical therapy settings over the years including pediatric and adult oncology, school-based pediatrics, inpatient and intensive care unit hospital-based settings, skilled nursing facilities, outpatient and sports-based orthopedics, and wound care.