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 is identified as the successor to the Intersex Society of North America (ISNA), charged with maintaining the ISNA website as a "historical archive"
Advocacy
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."
Reparations
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.