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Advocates for Informed Choice, dba interACT or interACT Advocates for Intersex Youth, is a
501(c)(3) A 501(c)(3) organization is a United States corporation, trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 50 ...
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.C3290401 Advocates for Informed Choice
. ''Business Search''. Office of the Secretary of State of California. Retrieved March 20, 2018.


History and structure

interACT was founded in 2006 in Cotati, California. The organization is now based in
Sudbury, Massachusetts Sudbury is a town in Middlesex County, Massachusetts, United States. At the 2020 census, it had a population of 18,934. The town, located in Greater Boston's MetroWest region, has a rich colonial history. History Incorporated in 1639, the bou ...
. The
board of directors A board of directors (commonly referred simply as the board) is an executive committee that jointly supervises the activities of an organization, which can be either a for-profit or a nonprofit organization such as a business, nonprofit organiz ...
includes Arlene Baratz, MD, Georgiann Davis, Emily Doskow, JD, Julie Greenberg, JD, Eric Lohman, Lynnell Stephani Long, Mani Mitchell, Karen Walsh, and
Reid Williams Reid Williams is a producer and director of films and television shows. In 2003, Williams produced the documentary '' Dangerous Living: Coming Out in the Developing World'', a film about gay and lesbian people in non-Western countries that was na ...
. 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 Informed consent is a principle in medical ethics and medical law, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treatme ...
, 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 The American University (AU or American) is a private federally chartered research university in Washington, D.C. Its main campus spans 90 acres (36 ha) on Ward Circle, mostly in the Spring Valley neighborhood of Northwest D.C. AU was charte ...
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 Female genital mutilation (FGM), also known as female genital cutting, female genital mutilation/cutting (FGM/C) and female circumcision, is the ritual cutting or removal of some or all of the external female genitalia. The practice is found ...
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 Prisma Health is a not-for-profit health organization in South Carolina, formed by the merging of Palmetto Health and the Greenville Health System in November 2017. Its headquarters are on the property of Greenville Memorial Hospital in Gree ...
, 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 The Ms. Foundation for Women is a non-profit organization for women in the United States, which had a deep commitment to diversity and was founded in 1972 by Gloria Steinem, Pat Carbine, Patricia Carbine, Letty Cottin Pogrebin and Marlo Thomas. The ...
and Liberty Hill Foundation. In 2013, the then youth leadership coordinator, Pidgeon Pagonis, testified for interACT before the
Inter-American Commission on Human Rights The Inter-American Commission on Human Rights (the IACHR or, in the three other official languages Spanish, French, and Portuguese CIDH, ''Comisión Interamericana de los Derechos Humanos'', ''Commission Interaméricaine des Droits de l'Homme'', ...
about the medical interventions they were subjected to as an intersex child, alongside Latin Americans
Mauro Cabral Mauro Cabral Grinspan, also known as Mauro Cabral, is an Argentinian intersex and trans activist, who serves as the executive director of GATE. A signatory of the Yogyakarta Principles, his work focuses on the reform of medical protocols and law ...
,
Natasha Jiménez Natasha Jiménez is a trans and intersex activist and author who is currently the General Coordinator for MULABI, Latin American Space for Sexualities and Rights, the first host of the Intersex Secretariat for ILGA. She is an advisory board member ...
and Paula Machado.


Media work

interACT has worked with
MTV MTV (Originally an initialism of Music Television) is an American cable channel that launched on August 1, 1981. Based in New York City, it serves as the flagship property of the MTV Entertainment Group, part of Paramount Media Networks, a di ...
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 Hanne Gaby Odiele (born 8 October 1988) is a Belgian model. Early life Odiele was born on 8 October 1988 in Kortrijk, Belgium. They were born with an intersex condition called androgen insensitivity syndrome. As a child, Odiele underwent m ...
to tackle social taboos and unnecessary surgeries. interACT published a media guide on covering intersex issues in January 2017.


Language

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."


Interface Project

The Interface Project is a tax-exempt 501(c)(3) nonprofit operating under the
fiscal sponsorship Fiscal sponsorship refers to the practice of non-profit organizations offering their legal and tax-exempt status to groups—typically projects—engaged in activities related to the sponsoring organization's mission. It typically involves a fee-b ...
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''.


See also

* Intersex human rights * Intersex rights in the United States


References


External links

* {{official website, http://www.interactadvocates.org 501(c)(3) organizations Non-profit organizations based in the San Francisco Bay Area Intersex rights organizations Legal advocacy organizations in the United States Bioethics Civil rights organizations in the United States 2006 establishments in California Intersex medical and health organizations Intersex support groups Intersex rights in the United States