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On Intersex + Rare Disease Awareness

  • Writer: yannick-robin eike mirko
    yannick-robin eike mirko
  • Jun 19, 2023
  • 6 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 eike mirko [who communicates in Spanish, English, + ASL] is a Manhattan-based Biawaisa/Yamoká-hu/Maorocoti multidisciplinary artist, choreographer, writer, doula and disability justice activist with a rare disease. His work sits at the intersection of movement, access, queer and indigenous survival, death care, and institutional accountability, using the body as archive, protest, and living evidence.

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Her relationship with dance and movement has never been linear or purely technical. From Off-Broadway to online, their work has been shaped by access, interruption, advocacy, and forced stillness. Movement and progress, for yannick-robin, is not simply choreography or activism; it is testimony, how a marginalized body speaks when institutions fail to listen. 
 

In 2021, yannick-robin participated in Drawing Breath, a visual and embodied project by Risa Puno that centered marginalized voices during COVID, with yannick-robin representing disabled people. The work focused on breath, endurance, and visibility at a time when disabled lives were being openly treated as expendable. This project cemented their understanding of movement as political: presence itself became resistance.
 

In 2022, disability justice became inseparable from his professional life. He was the first physically disabled actor/musician [acoustic and electric guitar, accordion, glockenspiel, xylophone, tambourine] to play a physically disabled role written through an ableist lens and publicly fought the theatre and writers for accountability. This work was documented in his blog and a documentary, a social media movement, and ultimately led to his inclusion in the University of Minnesota’s Tretter Transgender Oral History Project, archiving his contributions to disability, gender, and labor justice in theatre (the most recent edition/collection of years awaiting entering the public access archive due to funding and completion of editing. Help fund the preservation of non-cis history here).
 

That same year, he worked on Mr. Holland’s Opus at Ogunquit Playhouse as an actor/musician [bugle, trumpet, drum kit], a fully captioned production where his lived experience as a non-cis deaf and physically disabled artist directly informed their performance rhythm, physical storytelling, and musicality. Also in 2022, she performed in the inaugural Breaking the Binary Theatre Festival on Theatre Row under the direction of L Morgan Lee, delivering work as an actor involving monologuing about wheelchair use, access failure, and systemic injustice, using their body not as metaphor, but as evidence. 
 

In 2024 after a year and some change prioritizing deathcare work, they returned to theatre at New York Stage and Film (NYSAF), contributing to the work of disabled choreographer Jerron Herman as an actor/dancer. They also released their multi-genre EP passing that year, which catalogs their multi-instrumental writing and use of music for processing as they fall deeper into grief, hearing loss and deafness, and a world of being misunderstood for not being cis.

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In 2025, yannick-robin worked on the developmental process for Jay Alan Zimmerman’s upcoming show Songs for Hands on a Thursday, following Jerron Herman’s recommendation. The project included a residency at New York Theatre Barn’s Choreography Lab and a music workshop premiere, where yannick-robin served as both choreographer and dancer. The piece centered a Deaf father’s death and a CODA grappling with silence; yannick-robin’s role was to integrate sign language into choreography and bridge gaps between sound, access, and movement for d/Deaf performers.
 

Alongside his performance work, yannick-robin has been active in nonprofit and advocacy spaces since 2020. She worked for Imara Jones of TransLash Media, one of TIME Magazine’s 100 Most Influential People of 2023, where they were nominated for a Webby Award as an associate and digital producer for The TransLash Podcast, contributed to The Anti-Trans Hate Machine series, and wrote obituaries for TGNC siblings lost to violence. He has written for TalkDeath on racial disparities and discrimination in death care and other deathcare and injustice related topics and now offers obituary writing, death doulaship, and bereavement counseling for TGNC decedents and their families, people with rare diseases, and disabled communities.


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

© 2026 yannick-robin eike mirko

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