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 (business), 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 ...
nonprofit organization
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...
advocating for the legal and human rights of children with
intersex
Intersex people are those 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 binar ...
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 a city in Sonoma County, California, United States, located approximately north of San Francisco in U.S. Route 101 in California, the 101 corridor between Rohnert Park, California, Rohnert Park and Petaluma, ...
.
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 colonial history.
History
Incorporated in 1639, the boundar ...
. The
board of directors
A board of directors is a governing body that supervises the activities of a business, a nonprofit organization, or a government agency.
The powers, duties, and responsibilities of a board of directors are determined by government regulatio ...
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
Anne Tamar-Mattis is an American attorney, human rights advocate, and founder of interACT (formerly Advocates for Informed Choice). She currently serves as interACT's Legal Director.
Career
Tamar-Mattis spent six years as the Director of the N ...
,
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 (activist), Cheryl Chase to end shame, secrecy, and unnecessary genital surgeries on intersex people.Matthews, Karen (Oct 22, 2000). Debat ...
(ISNA), charged with maintaining the ISNA website as a "historical archive"
Advocacy
interACT advocates for the legal and human rights of children born with intersex traits. Strategies include media work and the development of youth leadership, in addition to litigation. Issues of focus are
informed consent
Informed consent is an applied ethics principle that a person must have sufficient information and understanding before making decisions about accepting risk. Pertinent information may include risks and benefits of treatments, alternative treatme ...
,
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 protect ...
, 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
Anne Tamar-Mattis is an American attorney, human rights advocate, and founder of interACT (formerly Advocates for Informed Choice). She currently serves as interACT's Legal Director.
Career
Tamar-Mattis spent six years as the Director of the N ...
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 university, private University charter#Federal, federally chartered research university in Washington, D.C., United States. Its main campus spans 90-acres (36 ha) on Ward Circle, in the Spri ...
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 northw ...
. In 2016, the
United Nations
The United Nations (UN) is the Earth, global intergovernmental organization established by the signing of the Charter of the United Nations, UN Charter on 26 June 1945 with the stated purpose of maintaining international peace and internationa ...
Committee Against Torture asked the United States government to comment on reports of
intersex medical interventions
Intersex medical interventions (IMI), sometimes known as intersex genital mutilations (IGM), are surgery, surgical, hormonal and other medical interventions performed to modify atypical or ambiguous genitalia and other sex characteristics, primar ...
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 that conducts research and advocacy on human rights. Headquartered in New York City, the group investigates and reports on issues including War crime, war crimes, crim ...
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
The Southern Poverty Law Center (SPLC) is an American 501(c)(3) nonprofit legal advocacy organization specializing in civil rights and public interest litigation. Based in Montgomery, Alabama, it is known for its legal cases against white sup ...
, and
pro bono
( English: 'for the public good'), usually shortened to , is a Latin phrase for professional work undertaken voluntarily and without payment. The term traditionally referred to provision of legal services by legal professionals for people who a ...
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
The Medical University of South Carolina (MUSC) is a public medical school in Charleston, South Carolina. It opened in 1824 as a small private college aimed at training physicians and has since established hospitals and medical facilities acros ...
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 ...
, 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 or a colonist is a person who establishes or joins a permanent presence that is separate to existing communities. The entity that a settler establishes is a settlement. A settler is called a pioneer if they are among the first settli ...
out of court by the
Medical University of South Carolina
The Medical University of South Carolina (MUSC) is a public medical school in Charleston, South Carolina. It opened in 1824 as a small private college aimed at training physicians and has since established hospitals and medical facilities acros ...
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
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal en ...
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 language, Portuguese CIDH, ''Comisión Interamericana de los Derechos Humanos'', ''Commission Interaméricaine des ...
about the medical interventions they were subjected to as an intersex child,
alongside Latin Americans
Mauro Cabral,
Natasha Jiménez and Paula Machado.
Media work
interACT has worked with
MTV
MTV (an initialism of Music Television) is an American cable television television channel, channel and the flagship property of the MTV Entertainment Group sub-division of the Paramount Media Networks division of Paramount Global. Launched on ...
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.
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, variations in sex characteristics (VSC), sexual anomalies, or sexual abnormalities, are congenital conditions affecting the reproductive system, in which developme ...
, 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
Scott Wiener (born May 11, 1970) is an American politician who has served in the California State Senate since 2016. A Democrat, he represents the 11th district, encompassing San Francisco and parts of San Mateo County. He is also the co-chair ...
(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 pe ...
*
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