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On Intersex + Rare Disease Awareness

Writer: yannick-robin eike mirkoyannick-robin eike mirko
Jun 19, 20236 min read

Updated: Nov 21, 2024

In the spirit of Pride and the recent Trans Intersex Solidarity Week, I decided to add some updates to a prior piece celebrating the October festivities surrounding intersex awareness.This evergreen resource list will hopefully guide your understanding of the history surrounding rights for these people, as well as shed a light on who to watch out for and appreciate in the present day, as these problems still unfortunately prevail in people's misunderstanding of how to treat intersex people - in the rare disease community, and beyond. I am still learning, and am open to any suggestions you might have.



Intersex and LGBTQIA+


Some people that are intersex identify within the LGBTQIA+ space, some do not. Some identify as both intersex and trans, others not so much. Regardless of that factor, it's important to understand the way that being intersex is not a choice, and that intersex people can be any gender! It is also important to understand that bills opposing gender and sex diversity, meant to target trans people - are going to critically impact 2% of people born intersex (according to interACT).



Whether or not an Intersex person identifies with the LGBTQIA+ experience, those anti-trans bills are going to potentially impact them, while the continuing violence of gender assigning surgeries that are done on these newborns without their consent prevails all around the country, often times without legal consequence. How fair is that?!



[video description: an 8-bit intersex flag, which is a bright yellow with a purple circle in the middle, sits above a swirling mix of a purple/yellow background and glitter shimmering in flashes]



It is a condition that can be traced to it's underlying cause of a rare disease, but that doesn't mean the intersex experience is the disease part. It is not caused by one specific thing, seeing as there are varying rare diseases that list combinations of the intersex experience as symptoms. Intersex conditions are categorized to divide the over 30 different Intersex conditions, as described by NIH - ethically translated by yours truly:


  • 46, XX intersex [known to have small testes, and at times will result in the urethral opening on the 'underside' of the penis]

  • 46, XY intersex [characterized by a penis smaller than three inches, atypical, or vaginal genitalia, without the presence of Müllerian structures, which are found in fetuses of all 'sexes' and develop into a uterus]

  • True gonadal intersex [when a person has both ovarian and testicular tissue]

  • Complex or undetermined intersex


I say 'condition' and not 'disease' with this area of the rare experience due to the harsh nature of stigma within medicine and how it impacts lived experience, said best by InterACT, "“Disorder” or “difference of sex development” (DSD) is still a common medical term for intersex traits. Many intersex people reject the term “DSD” because it supports the idea that their bodies are wrong, or up to doctors to “fix.” Advocates in the United States often bring up the fact that until 1973, being gay was considered a mental disorder. Many natural human differences have been framed as medical problems, until communities fought for acceptance." Henceforth in the context of being intersex: what was once considered "disorder/disease" is now considered "condition".



A Recent History of Rights


Now that we are gaining our understanding of the science behind these experiences, it's time to learn about the history of the movement for equal rights for intersex people, starting

with Intersex Awareness Day 28~ years ago, when members of the (no longer active) Intersex Society of North America, along with allies, made a presence at the annual conference of the American Academy of Pediatrics in Boston, MA, 1996. The group demonstrated and advocated for themselves, sharing pain publicly while denouncing the practice of non-consensual infant genital surgeries, making demands that the medical industry pay attention, and change things before more people get hurt and are forced into lives that are not their own.


Human Rights Watch published its first report on the consequences of these medically unnecessary surgeries in June of 2017, working closely with consultant Dr. Suegee Tamar-Mattis, who is intersex, a physician, and a parent, as well as with interACT Advocates for Intersex Youth. Along with the report, Human Rights Watch produced a video, featuring a Chicago intersex activist, Pidgeon Pagonis. In October of 2017, they published another report, focusing on the discomfort of US medical providers with the continued use of these surgeries.


In a long-fought for victory for intersex people, a hospital in Chicago pledged in 2020 to stop performing medically unnecessary surgeries on children born with intersex traits. The Ann & Robert H. Lurie Children’s Hospital also became the first hospital in the United States to publicly apologize for the harm these surgeries caused intersex people, who are born with traits that don’t fit conventional expectations of the two binaries society is fixated on boxing people into.


The pride flag became intersex inclusive in 2021, and as recently as this year we've seen victories with the American Bar Association adopting a resolution in support of intersex bodily autonomy opposing nonconsensual surgeries on intersex children, Australia's ACT Government passed the first laws protecting intersex babies from unnecessary surgeries without consent, Kenya enacted a law granting equal rights and recognition to intersex people being the first African country granting the intersex community these universal rights, and the fighting for rights goes on and on.


There is a long way to go when it comes to safety, justice, and equality for intersex people. Below you can find intersex-affirming books, videos, and other resources helpful to both members of the community, and to allies and families. Happy reading!


Articles

Books

Resources

Videos

Comments

yannick-robin, is a Manhattan, NYC-based Biawaisa/Yamoká-hu/Maorocoti multidisciplinary artist and activist with a rare disease.
He began working with nonprofits in 2020, most notably working for Imara Jones (one of TIME Magazine's 100 most influential people of 2023), owner of TransLash Media, where trans stories are centered in order to save trans lives. While under her wing, yannick-robin was nominated for a Webby Award as an associate and digital producer for the TransLash Podcast with Imara Jones, worked on The Anti-Trans Hate Machine: A Plot Against Humanity series as a producer and fact checker, and wrote obituaries for their TGNC siblings lost to violence in the United States and its Territories (more on this here). They have since then written for TalkDeath (read Racial Disparities and Discrimination in the Death Care Industry), focusing on Queer and BIPOC end-of-life preparations and equality, as well as making strides as a disability activist within the performance space, being Off-Broadway in the first TGNC Theatre Festival in the professions history, + being the first wheelchair user to perform in several iconic regional theatres of the US while advocating for accessibility for trans and disabled performers and continuing on with activism as a freelance writer and advocate/consultant. They were recently added to the University of Minnesota’s Tretter Transgender Oral History Project for his contributions to the progress for trans rights in death care and theatre. Now offering obituaries, death doulaship, and bereavement counseling for TGNC decedents and their families as well as trans people lost to violence, people with rare diseases, and the disabled. 
for commissions, death care, speaking engagements and more, press the contact button.
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yannick-robin eike mirko is represented by Arise Artists Agency

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