Advocates for Intersex Youth
|Legal status||501(c)(3) nonprofit organization|
|Purpose||To advocate for the civil rights of children with intersex variations|
|Headquarters||Sudbury, Massachusetts, U.S.|
|Advocates for Informed Choice|
Advocates for Informed Choice, dba interACT or interACT Advocates for Intersex Youth, is a 501(c)(3) nonprofit organization using innovative strategies to advocate for the legal and human rights of children with intersex traits. The organization was founded in 2006 and formally incorporated on April 12, 2010.
History and structure
interACT was founded in 2006 in Cotati, California. The organization is now based in Sudbury, Massachusetts. The board of directors includes Arlene Baratz, MD, Georgiann Davis, Emily Doskow, JD, Julie Greenberg, JD, Eric Lohman, Lynnell Stephani Long, Mani Mitchell, Karen Walsh, and Reid Williams. Staff members include Kimberly Zieselman, JD, Executive Director, and Anne Tamar-Mattis, JD, Legal Director.
interACT uses innovative strategies to advocate for the legal and human rights of children born with intersex traits, including media work and the development of youth leadership, in addition to strategic litigation. Issues of focus are informed consent, insurance, identity documents, school accommodation, discrimination, medical records retrieval, adoption, military service, medical privacy, refugee asylum, and wider international human rights.
Physical integrity and bodily autonomy
In 2014, following testimony by then staff member Pidgeon Pagonis, Anne Tamar-Mattis was published on medical interventions as torture in healthcare settings, in a book by the Center for Human Rights & Humanitarian Law at American University Washington College of Law. In 2016, the United Nations Committee Against Torture asked the United States government to comment on reports of intersex medical interventions on infants and children, following submission of a report by interACT. As part of its submission, interACT stated that it is "unaware of any jurisdiction in the U.S. that enforces its own FGM laws in cases where the girl undergoing clitoral cutting has an intersex trait".
In July 2017, Human Rights Watch and interACT published a major report on medically unnecessary surgeries on intersex children, "I Want to Be Like Nature Made Me", based on interviews with intersex persons, families and physicians. The report found that "Intersex people in the United States are subjected to medical practices that can inflict irreversible physical and psychological harm on them starting in infancy, harms that can last throughout their lives." The report calls for a ban on "surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred."
M.C. v. Aaronson case
On May 14, 2013, interACT, The Southern Poverty Law Center, and pro bono counsel for the private law firms of Janet, Jenner & Suggs and Steptoe & Johnson LLP filed a lawsuit against South Carolina Department of Social Services (SCDSS), Greenville Health System, Medical University of South Carolina and individual employees for performing an irreversible and medically unnecessary surgery on an infant who was in the state's care at the time of the surgery.
The defendants sought to dismiss the case and seek a defense of qualified immunity, but these were denied by the District Court for the District of South Carolina. In January 2015, the Court of Appeals for the Fourth Circuit reversed this decision and dismissed the complaint, stating that, "it did not 'mean to diminish the severe harm that M.C. claims to have suffered' but that a reasonable official in 2006 did not have fair warning from then-existing precedent that performing sex assignment surgery on sixteen-month-old M.C. violated a clearly established constitutional right." The Court did not rule on whether or not the surgery violated M.C.'s constitutional rights. State suits were subsequently filed. In July 2017, it was reported that the case had been settled out of court by the Medical University of South Carolina for $440,000, without admission of liability.
Youth leadership development
interACT Youth is a program for intersex youth, run by intersex youth. All members between 14 and 25 years old, have intersex traits, and are in a place where they are ready to speak out about their experiences. interACT Youth works to provide tomorrow's scholars and activists a platform for their vital perspectives. A product of this work entitled "What We Wish Our Doctors Knew" was the first of its kind: Intersex youth talking back to medical providers and caregivers. InterACT Youth is funded in part by Ms. Foundation and Liberty Hill Foundation.
In 2013, the then youth leadership coordinator, Pidgeon Pagonis, testified for interACT before the Inter-American Commission on Human Rights about the medical interventions they were subjected to as an intersex child, alongside Latin Americans Mauro Cabral, Natasha Jiménez and Paula Machado.
interACT has worked with MTV on the program Faking It, notable for providing the first intersex main character in a television show, and television's first intersex character played by an intersex actor. In 2017, interACT began working with Belgian-born model Hanne Gaby Odiele to tackle social taboos and unnecessary surgeries.
interACT published a media guide on covering intersex issues in January 2017.
Having historically used the current clinical terminology of disorders of sex development, interACT issued a strong statement favoring the term intersex in 2016, citing increasing acceptance and public awareness.
Involvement in Senate Bill 201
InterACT has been an advocate for a variety of legislative movements related to intersexuality and those affected. One example of their advocacy is the organizations support and co-sponsorship of the proposed legislation of California Senate Bill 201.
Proposed by Senator Scott Wiener (D-San Francisco) on January 28, 2019 and amended on March 25, 2019, the proposal has yet to be voted on. The Senate Bill would “ensure intersex individuals can provide informed consent before any medical treatments or interventions that could irreversibly affect their fertility or sexual function,” as stated on the interACT website. The bill would not prohibit intervention in the instance of a medical emergency.
InterACT commented on the legislation, stating that “This long overdue measure will give individuals the opportunity to delay medically unnecessary, potentially harmful, irreparable procedures until they have the ability to make an informed decision for themselves.”
The Interface Project is a tax-exempt 501(c)(3) nonprofit operating under the fiscal sponsorship of interACT. Founded in 2012, and currently curated by Jim Ambrose, The Interface Project features stories of people born with intersex traits - or variations of sex anatomy - under the banner: No Body Is Shameful ®.
- "Form 990: Return of Organization Exempt from Income Tax". Advocates for Informed Choice dba interACT. Guidestar. December 31, 2016.
- "Advocates for Informed Choice". Exempt Organizations Select Check. Internal Revenue Service. Retrieved March 20, 2018.
- "Mission and History". interACT. 2016. Retrieved February 6, 2016.
- "AIC's Mission". aiclegal.org. Retrieved 22 May 2013.
- "C3290401 Advocates for Informed Choice". Business Search. Office of the Secretary of State of California. Retrieved March 20, 2018.
- "Resolve: Healing the Legacy of Intersex/DSD Treatment". Ashoka: Innovators for the Public. 2012.
- "Our Board of Directors". interACT. Retrieved February 6, 2016.
- "AIC announces transition & staff changes". Advocates for Informed Choice Blog. Advocates for Informed Choice. July 8, 2014. Retrieved July 8, 2014.
- "AIC: What we do". Retrieved May 23, 2013.
- Tamar-Mattis, Anne (December 10, 2012). "Report to the UN Special Rapporteur on Torture: Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment" (PDF) (Press release). AIC. Retrieved May 23, 2013.
- Tamar-Mattis, Anne (April 19, 2012). "Sterilization and Minors with Intersex Conditions in California Law". California Law Review.
- Tamar-Mattis, Anne (2014). "Medical Treatment of People with intersex conditions as Torture and cruel, inhuman, or Degrading Treatment or Punishment". In Center for Human Rights & Humanitarian Law; Washington College of Law; American University (eds.). Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report. Washington, D.C.: Center for Human Rights & Humanitarian Law. pp. 91–104. Retrieved May 20, 2016.
- interACT (June 2016). "Recommendations from interACT: Advocates for Intersex Youth regarding the List of Issues for the United States for the 59th Session of the Committee Against Torture" (PDF).
- United Nations; Committee against Torture (December 2016). "List of issues prior to submission of the sixth periodic report of the United States of America".
- interACT (June 2016). Recommendations from interACT: Advocates for Intersex Youth regarding the List of Issues for the United States for the 59th Session of the Committee Against Torture (PDF).
- Human Rights Watch (July 25, 2017). "US: Harmful Surgery on Intersex Children". Human Rights Watch. Retrieved July 25, 2017.
- Stewart, Philippa (July 25, 2017). "Interview: Intersex Babies Don't Need 'Fixing'". Human Rights Watch. Retrieved July 25, 2017.
- Human Rights Watch; interACT (July 2017). "I Want to Be Like Nature Made Me". ISBN 978-1-62313-502-7.
- "AIC's Groundbreaking Lawsuit Accuses South Carolina, Doctors and Hospitals of Performing Unnecessary Surgery on Infant". Advocates for Informed Choice. Retrieved 22 May 2013.
- "Groundbreaking SPLC lawsuit accuses South Carolina, doctors and hospitals of unnecessary surgery on infant". Southern Poverty Law Center. May 14, 2013. Retrieved May 22, 2013.
- Sesana, Laura (May 18, 2013). "Adoptive parents sue over son's sex-assignment surgery". The Washington Times. Retrieved May 22, 2013.
- "Sex change surgery performed on 16-month-old South Carolina child without consent". Daily Kos.
- "Lawsuit Filed Over Unnecessary Surgery on Intersex Baby". www.advocate.com. 14 May 2013.
- Hospital Sued For Performing Unneeded Sex-Assignment Surgery on Baby Archived June 6, 2013, at the Wayback Machine
- Largent, Emily (March 5, 2015). "M.C. v. Aaronson". Petrie-Flom Center, Harvard Law.
- interACT (January 27, 2015). "Update on M.C.'s Case – The Road to Justice can be Long, but there is more than one path for M.C." Archived from the original on February 19, 2017. Retrieved February 18, 2017.
- Ghorayshi, Azeen (July 27, 2017). "A Landmark Lawsuit About An Intersex Baby's Genital Surgery Just Settled For $440,000". BuzzFeed. Retrieved July 28, 2017.
- "interACT Youth".
- Hilary Weaver (August 10, 2016). "Meet Chicago's White-House-Honored Intersex Activist, Pidgeon Pagonis". Paper. Retrieved January 8, 2017.
- "The Pursuit of Happiness in Our Original Beautiful Bodies: Pidgeon Pagonis' Recent Testimony before the Inter-American Commission on Human Rights". interACT. April 8, 2013. Retrieved January 8, 2017.
- Comisión Interamericana de Derechos Humanos (November 2015), Violencia contra Personas Lesbianas, Gays, Bisexuales, Trans e Intersex en América (PDF), Inter-American Commission on Human Rights
- "Meet television's groundbreaking intersex character". Buzzfeed.
- ""Faking It" Breaks New Ground With First Intersex Actor To Play Intersex Character On TV". New Now Next. Retrieved April 5, 2016.
- Miller, Susan (January 23, 2017). "Model Hanne Gaby Odiele reveals she is intersex". USA Today.
- "International Fashion Model Hanne Gaby Odiele Reveals She is Intersex: Announces Partnership with interACT Advocates for Intersex Youth to Raise Awareness About the Importance of Human Rights Protections for Intersex People Worldwide" (PDF). interACT. January 23, 2017.
- interACT (January 2017), Media Guide, Covering the Intersex Community (PDF)
- interACT (May 2016). "interACT Statement on Intersex Terminology". interACT.
- "California's SB 201 for Intersex Autonomy | interactadvocates". Retrieved 2019-04-19.
- "Senate Bill 201".
- "The Interface Project". The Interface Project. 2012.