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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 ...
nonprofit organization A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...
using innovative strategies to advocate for the legal and human rights of children with
intersex Intersex people are individuals born with any of several sex characteristics including chromosome patterns, gonads, or genitals that, according to the Office of the United Nations High Commissioner for Human Rights, "do not fit typical b ...
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 Cotati (; Miwok: ''Kota’ti'') is an incorporated city in Sonoma County, California, United States, located approximately north of San Francisco in the 101 corridor between Rohnert Park and Petaluma. Cotati's population as of the 2020 Censu ...
. 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 b ...
. 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 orga ...
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 Executive director is commonly the title of the chief executive officer of a non-profit organization, government agency or international organization. The title is widely used in North American and European not-for-profit organizations, though ...
, and Anne Tamar-Mattis, JD, Legal Director. interACT is identified as the successor to the
Intersex Society of North America The Intersex Society of North America (ISNA) was a non-profit advocacy group founded in 1993 by Cheryl Chase to end shame, secrecy, and unwanted genital surgeries.Matthews, Karen (Oct 22, 2000). Debate Grows Over Using Surgery on Infants with Amb ...
(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 treat ...
,
insurance Insurance is a means of protection from financial loss in which, in exchange for a fee, a party agrees to compensate another party in the event of a certain loss, damage, or injury. It is a form of risk management, primarily used to hedge ...
, identity documents, school accommodation, discrimination, medical records retrieval, adoption, military service,
medical privacy Medical privacy or health privacy is the practice of maintaining the security and confidentiality of patient records. It involves both the conversational discretion of health care providers and the security of medical records. The terms can also ...
, 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 cha ...
Washington College of Law The American University Washington College of Law (AUWCL or WCL) is the law school of American University, a private research university in Washington, D.C. It is located on the western side of Tenley Circle in the Tenleytown section of nort ...
. In 2016, the United Nations Committee Against Torture asked the United States government to comment on reports of
intersex medical interventions Intersex medical interventions, also known as intersex genital mutilations (IGM), are surgical, hormonal and other medical interventions performed to modify atypical or ambiguous genitalia and other sex characteristics, primarily for the purposes ...
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 Human Rights Watch (HRW) is an international non-governmental organization, headquartered in New York City, that conducts research and advocacy on human rights. The group pressures governments, policy makers, companies, and individual human ...
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 Green ...
, 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 Immunity may refer to: Medicine * Immunity (medical), resistance of an organism to infection or disease * ''Immunity'' (journal), a scientific journal published by Cell Press Biology * Immune system Engineering * Radiofrequence immunity de ...
, 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 A settler is a person who has migrated to an area and established a permanent residence there, often to colonize the area. A settler who migrates to an area previously uninhabited or sparsely inhabited may be described as a pioneer. Settle ...
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 The Liberty Hill Foundation is a non-profit organization founded by Sarah Pillsbury, heir to the Minnesota Pillsbury baking fortune, along with Anne Mendel, Larry Janss and Win McCormack, in 1976. Its motto is "Change. Not Charity." The name of t ...
. 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 memb ...
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 ...
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 Disorders of sex development (DSDs), also known as differences in sex development, diverse sex development and variations in sex characteristics (VSC), are congenital conditions affecting the reproductive system, in which development of chromoso ...
, 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 people are born with sex characteristics, such as chromosomes, gonads, or genitals, that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies." Intersex peo ...
*
Intersex rights in the United States Intersex people in the United States have some of the same rights as other people, but with significant gaps, particularly in protection from non-consensual cosmetic medical interventions and violence, and protection from discrimination. Actions ...


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