Pagonis was born in 1986 in Chicago, Illinois, and has Mexican and Greek ancestry. As a child, Pagonis, who is queer and nonbinary and uses they/them pronouns, was diagnosed with androgen insensitivity syndrome. They were not told of this condition, but instead were raised as a girl, told that they had ovarian cancer, and subjected to a series of surgeries to alter their genitalia. They learned about intersex traits during their freshman year in college, while attending a lecture at DePaul University. They subsequently accessed their own medical records, and learned the truth about their condition. In 2020, they learned that their AIS diagnosis was incorrect and that they have another intersex variation, as their low levels of estrogen and osteopenia might have indicated. Pagonis graduated from DePaul with bachelor's and master's degrees in women and gender studies.
Activism
Pagonis joined the advocacy organization interACT a few years after discovering they were intersex. They became the leadership coordinator of the youth program at interACT. In 2013, Pagonis testified with Mauro Cabral, Natasha Jiménez and Paula Sandrine Machado before the Inter-American Commission on Human Rights about the medical interventions they were subjected to as an intersex child. They were also featured in the 2012 documentary Intersexion. In 2014, Pagonis created a documentary of their own, The Son They Never Had: Growing Up Intersex, which they tour around the country, advocating against nonconsensual "corrective surgeries". This work was published in a bioethics journal, Narrative Inquiry in Bioethics. The Son They Never Had was also shown at the LeedsQueer Film Festival in the UK in March 2017. In 2015, Pagonis created the hashtag campaign #intersexstories for Intersex Awareness Day. The campaign attracted a huge following, with many intersex people sharing their stories. Pagonis also appeared in a BuzzFeed video about intersex bodies, identities and experiences. Pagonis is a writer for Everyday Feminism, where they have addressed subjects including anti-black racism in the intersex community, interviewing Sean Saifa Wall and Lynnell Stephani Long, and debate over the inclusion of intersex people in the LGBTQA acronym. Pagonis appeared in a 2016 episode of the television seriesTransparent. They lobbied for the part when meeting show creator Jill Soloway at a White Houseawards ceremony. Pagonis appeared on the cover of the January 2017 National Geographic "Gender Revolution" issue. They were one of the intersex activists who wrote in expressing concern that being intersex was defined by the magazine as a disorder. National Geographic responded to reader pressure by updating the definition in the online issue. In June 2017, Pagonis appeared in a video for Teen Vogue alongside fellow intersex advocates Emily Quinn and Hanne Gaby Odiele, explaining what it means to be intersex.