Si Jin Guo (2024)
Intersex 101: A Digital, “All You Need to Know” Resource for Intersex Adolescents
When I asked the question: “has anyone ever heard the term ‘intersex’ before?”, some people attending the Media Studies Showcase raised their hands. Following up with asking the audience whether they could actually explain what “intersex” meant yielded a single person who felt confident in their knowledge. One might expect this level of obscurity to be linked with a very rare condition, but estimates show that at least one out of every hundred individuals has an intersex condition— an umbrella covering over 40+ congenital differences in sex development. Intersex people are born with differences to their sex chromosomes, reproductive organs, genitalia, gonads and/or hormones, and have lived through ridicule, experimentation and sterilization over the past few centuries. Today, being intersex remains a shameful secret for many with such a diagnosis, and intersex people are still subject to risky, unnecessary and deeply traumatizing cosmetic procedures to change their genitalia and frequently, sterilize them. On top of the unnecessary medicalization faced during childhood, what little medical and psychological support from the medical system drops off for intersex patients during their teenage years, as being intersex is seen as a “children’s disorder”. Intersex adolescents approach adulthood having often endured extensive medical traumas, social discrimination and interpersonal dysfunction, resulting in high rates of psychiatric illness, unemployment and lower educational attainment. There is no doubt that these poor outcomes are tied to medical traumas that are compounded and often caused by significant social stigma, and worsened by the inaccessibility of information online that can educate and empower intersex youth. This project seeks to use information as a tool of empowerment and knowledge as a source of resistance— I firmly believe that the first step to deconstructing stigma is to return agency to the hands of the stigmatized individual, whether that occurs during a doctor’s appointment or a conversation with a peer. As adolescents grow into emerging adults, we find confidence through discovering and standing by who we are, an experience that an intersex adolescent has as much right to as anyone else. The Intersex 101 resource will utilize interviews with intersex young adults, ethnographic studies of DSD/intersex clinics, and pre-/post-exposure user surveys to create an information database aimed at filling the gaps of accessible intersex related information online, for the purpose of empowering intersex adolescents. Additionally, this project will be carried out by a team of all intersex students, who have resolved to create the empowering tools we would have benefited from in those crucial years.
Prototype: https://intersex101.com/01_INTRO_TO_INTERSEX/
Biography
Si-Jin Guo (who goes by SJ) is a Media Studies major and Science, Technology and Society minor who is passionate about addressing the plight of intersex youth. In his late teens, he was diagnosed with an intersex condition and experienced unethical and violating treatment from an intersex specialist. Upon realizing the lack of information and tools for self advocacy that the intersex community experiences, he has dedicated himself to providing intersex youth with the tools to maximize their autonomy through a community outreach initiative that he co-founded. He used his communications background to create an innovative resource prototype, in hopes that widespread access to crucial knowledge about intersex conditions and obstacles in medical care may help other intersex youth prevent what he and many others have experienced. More importantly, he believes that widespread information about intersex conditions will reduce the stigma and secrecy that isolates intersex youth, returning power and choice to a community that has historically been stripped of agency via medicalization and discrimination. SJ will be the principal investigator of the multi-phase study to determine the primary obstacles for intersex self advocacy in a clinical setting, and is the director for the completion of Intersex 101. SJ plans to attend graduate school at Columbia studying sociomedical sciences while continuing to develop the Intersex 101 resource with his team. Link to Bio.
The Intersex 101 team: This project also owes its conception, creation and continued development to a team of young and capable researchers. Both of the individuals on the Intersex 101 team, James and Sapphire, are intersex and have engaged in significant community and research work advancing intersex wellbeing. You can read more about them below and access their researcher biographies to take a look at their past work, experiences, and research interests.
James is the youngest member of the Intersex 101 team who is incredibly passionate about the study of biomedical sciences and the advancement of biological research into intersex conditions. Since the age of 14, he has been leading an intersex community initiative together with Sapphire and SJ, focusing on compiling an extensive collection of relevant research and case studies about all known intersex conditions. His work has helped decipher hundreds of intersex individual’s medical records and profiles to provide those with decades long questions about their diagnoses, bodies and surgeries the answers they seek. At 17, he co-authored a paper that was presented at a national conference about intersex medical coverage. He works part time with a non profit organization for intersex rights in Canada that is dedicated to community support and spreading awareness in Canada and beyond. https://jameszabarelos.info/
Sapphire is the member of the Intersex 101 team who is most passionate about bridging the research and work into tangible outcomes for intersex youth. Due to being the primary caretaker of a disabled sibling, she developed a dedication towards the psychological wellbeing of marginalized groups that fall through gaps in social safety nets. Over the past four years, she has spent thousands of hours providing psychological support and community organization to hundreds of intersex youth, and was the initial founder of the intersex community initiative that inspired this project. She continued to manage crises and address the complex trauma accompanying intersex youth even while experiencing homelessness after her diagnosis. Currently, she is a co-author and on the advisory board of an NIH funded study on intersex adolescents and works part time with a game development studio. http://www.sapphireaurelis.info/
