InterACT

InterACT, formally known as Advocates for Informed Choice and also styled interACT Advocates for Intersex Youth, is a United States nonprofit organization focused on the legal and human-rights protection of people born with intersex traits, particularly children and adolescents. The organization began in Cotati, California, in 2006 and was formally incorporated on April 12, 2010. It is now based in Sudbury, Massachusetts, and operates as a 501(c)(3) public-interest advocacy organization rather than as a commercial software or enterprise-services brand. The organization’s central concern is bodily autonomy. InterACT challenges medically unnecessary or deferrable interventions on infants and children whose sex characteristics vary from typical definitions of male or female, especially procedures that may irreversibly affect fertility, sexual function, sensation, or identity before the person can participate in the decision. Its work combines litigation, legislative advocacy, public education, media engagement, youth leadership, and submissions to domestic and international human-rights bodies. Its policy agenda also includes informed consent, health-insurance access, medical-record retrieval, identity documents, school accommodation, discrimination, adoption, military service, medical privacy, refugee asylum, and broader intersex equality. A major part of InterACT’s public profile comes from its work on physical integrity and alleged human-rights abuses in healthcare. In 2013, it helped bring M.C. v. Aaronson, a case concerning irreversible surgery performed on an infant in state care. Although the federal constitutional claim was dismissed on qualified-immunity grounds by the Fourth Circuit in 2015, the court did not decide whether the surgery itself violated the child’s constitutional rights. A related state-level settlement with the Medical University of South Carolina was reported in 2017 for $440,000 without an admission of liability. InterACT has also used international advocacy mechanisms. Following an InterACT submission, the United Nations Committee Against Torture asked the United States in 2016 to respond to reports concerning medical interventions on intersex infants and children. In 2017, InterACT and Human Rights Watch published the report I Want to Be Like Nature Made Me, which documented reported physical and psychological harms associated with medically unnecessary surgeries and called for procedures to be deferred when they can safely await the individual’s informed participation. Youth participation is a defining feature of the organization. interACT Youth is a peer-led program for intersex people aged 14 to 25 who are prepared to speak publicly about their experiences. Its work includes the publication What We Wish Our Doctors Knew, which presents guidance from intersex youth to healthcare providers and caregivers. InterACT has also supported public storytelling and media projects, including work connected with MTV’s Faking It and collaboration with model Hanne Gaby Odiele. The Interface Project, founded in 2012 and fiscally sponsored by InterACT, presents stories of people born with intersex traits under the message “No Body Is Shameful.” The organization maintains the website of the Intersex Society of North America as a historical archive and is commonly described as its successor. InterACT has additionally contributed to terminology and media standards, including a 2016 statement favoring the term “intersex” over clinical terminology centered on disorders. Its activities demonstrate a nonprofit model built around rights advocacy, community leadership, legal action, and cultural change rather than commercial products.

InterACT originated in 2006 in Cotati, California, as an advocacy organization addressing the legal and human-rights needs of people with intersex traits. It was formally incorporated on April 12, 2010, as Advocates for Informed Choice and developed a mission centered on protecting children from irreversible, medically unnecessary interventions performed before they can participate in decisions about their bodies. The organization is associated with the legacy of the Intersex Society of North America and maintains the former organization’s website as a historical archive. Its strategy has combined direct legal work with public education and movement-building. InterACT has worked on questions involving informed consent, discrimination, identity documents, education, insurance, medical privacy, access to records, adoption, military service, and asylum. Rather than treating intersex issues solely as medical questions, it frames bodily autonomy and deferrable intervention as matters of civil rights and human rights. A central legal effort was M.C. v. Aaronson, filed on May 14, 2013, with the Southern Poverty Law Center and attorneys from Janet, Jenner & Suggs and Steptoe & Johnson. The case challenged surgery performed on an infant in South Carolina state care and named state agencies, healthcare institutions, and individual personnel as defendants. A federal district court rejected the defendants’ initial effort to dismiss the action and their qualified-immunity position. In January 2015, however, the Fourth Circuit reversed that ruling and dismissed the federal complaint, holding that officials in 2006 lacked sufficiently clear precedent to provide fair warning that the conduct violated a clearly established constitutional right. The appellate ruling did not resolve whether the surgery was unconstitutional. A related state proceeding was later reported as settled in 2017, with the Medical University of South Carolina paying $440,000 without admitting liability. InterACT also expanded its international advocacy. In 2013, youth leadership coordinator Pidgeon Pagonis testified before the Inter-American Commission on Human Rights about their experiences of medical intervention as an intersex child. In 2016, after an InterACT submission, the United Nations Committee Against Torture asked the United States to address reports concerning interventions on intersex infants and children. InterACT has argued that existing legal protections against genital cutting are not consistently applied when the child has intersex traits, making the issue one of accountability as well as healthcare practice. Public research and coalition work became especially visible in 2017, when InterACT and Human Rights Watch released I Want to Be Like Nature Made Me. Based on interviews with intersex people, families, and physicians, the report described reported lifelong physical and psychological consequences and recommended prohibiting procedures that alter gonads, genitals, or internal sex organs when the child is too young to participate, the procedures carry meaningful risk, and the intervention can safely be deferred. Youth leadership has remained a distinctive organizational feature. interACT Youth is a peer-led program for intersex people aged 14 to 25. It gives young people a platform in policy, education, and public storytelling and produced What We Wish Our Doctors Knew, a resource presenting intersex youths’ perspectives to clinicians and caregivers. The organization has also engaged popular media, including work related to MTV’s Faking It, and collaborated with model Hanne Gaby Odiele in 2017 to challenge social stigma and the normalization of unnecessary surgery. In 2012, the Interface Project was established under InterACT’s fiscal sponsorship. Curated by Jim Ambrose, it features first-person stories from people born with intersex traits or variations in sex anatomy and uses the message “No Body Is Shameful.” InterACT has additionally developed media guidance and made a terminology statement favoring “intersex,” reflecting its view that community-preferred language can improve public understanding and reduce pathologization. The organization later supported California Senate Bill 201, introduced by Senator Scott Wiener in January 2019 and amended in March of that year. The proposal sought to require informed consent before non-emergency interventions that could irreversibly affect fertility or sexual function. The bill had not been voted on according to the cited material. InterACT’s overall identity is therefore that of a focused civil-rights and human-rights nonprofit whose principal outputs are advocacy, litigation, research, education, and community leadership rather than commercial products.

1. 2019California Senate Bill 201 advocacy

   InterACT supported proposed legislation concerning informed consent for irreversible, non-emergency interventions affecting intersex people.

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2. 2017Human Rights Watch report released

   InterACT and Human Rights Watch published a major report on medically unnecessary surgeries involving intersex children.

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3. 2013M.C. v. Aaronson filed

   InterACT and partners filed a federal case challenging irreversible surgery performed on an infant in state care.

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4. 2012Interface Project founded

   The Interface Project began under InterACT’s fiscal sponsorship to share stories of people born with intersex traits.

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5. 2010Formal incorporation

   The organization was formally incorporated on April 12, 2010.

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6. 2006Organization founded

   InterACT was established in Cotati, California, to advocate for informed choice and the rights of people with intersex traits.

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A specialist intersex-rights organization combining legal advocacy, youth leadership, public education, media work, and human-rights campaigning to protect bodily autonomy and informed consent.

• interACT YouthYouth leadership program

  A peer-led program for intersex youth aged 14 to 25. It develops leadership, public-speaking, and advocacy capacity while giving young people a platform to communicate their experiences and priorities to healthcare providers, policymakers, families, and the wider public.

• The Interface ProjectStorytelling and public-education project2012

  A fiscally sponsored project founded in 2012 that presents stories from people born with intersex traits or variations in sex anatomy. Its public-facing message, “No Body Is Shameful,” is intended to counter stigma and promote visibility.

• What We Wish Our Doctors KnewYouth-produced educational resource

  A resource created through interACT Youth in which intersex young people communicate their experiences and recommendations directly to medical providers and caregivers.

• I Want to Be Like Nature Made MeHuman-rights research report2017

  A 2017 report produced with Human Rights Watch documenting reported physical and psychological harms associated with medically unnecessary interventions on intersex children and advocating deferral where safe.

• Intersex Media GuideMedia-education resource2017

  Guidance published by InterACT to support more accurate, respectful, and less stigmatizing media coverage of intersex people and issues.

• 2019California Senate Bill 201

  California

  InterACT advocated for and co-sponsored proposed legislation requiring informed consent before non-emergency interventions that could irreversibly affect fertility or sexual function.

  Outcome. The proposal had been introduced and amended but had not been voted on in the cited material.

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• 2017Intersex media and visibility campaign

  United States · International

  InterACT worked with MTV’s Faking It and collaborated with Hanne Gaby Odiele to increase visibility and challenge taboos surrounding intersex traits and unnecessary surgery.

  Outcome. The work contributed to broader public representation of intersex people, including an intersex television character played by an intersex actor.

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• 2016UN Committee Against Torture advocacy

  United States · International

  InterACT submitted information concerning medical interventions on intersex infants and children to the United Nations Committee Against Torture.

  Outcome. The committee requested that the United States respond to the reported practices.

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• 2013Inter-American human-rights testimony

  Americas

  InterACT supported testimony by Pidgeon Pagonis before the Inter-American Commission on Human Rights concerning medical interventions experienced during childhood.

  Outcome. The testimony brought intersex medical intervention into a regional human-rights forum.

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• 2017Expansion of research and coalition advocacyStrategy

  InterACT sought to document the consequences of medically unnecessary interventions and strengthen the evidentiary basis for policy reform.

  What changed. It partnered with Human Rights Watch on a major report based on interviews with intersex people, families, and physicians.

  Aftermath. The report called for deferral of risky, non-emergency procedures until the affected person can participate in the decision.

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• 2016Adoption of intersex-centered terminologyStrategy

  InterACT had historically used clinical terminology referring to disorders of sex development, while public acceptance of the term intersex was increasing.

  What changed. The organization issued a strong statement supporting “intersex” as its preferred public terminology.

  Aftermath. The decision reinforced a community-centered, non-pathologizing approach to public communication and advocacy.

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• 2019InterACT supports California Senate Bill 201

  InterACT advocated and co-sponsored proposed California legislation concerning informed consent before non-emergency interventions that could irreversibly affect fertility or sexual function.

  Regulation
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• 2017I Want to Be Like Nature Made Me report published

  InterACT and Human Rights Watch released a report documenting alleged harms from medically unnecessary surgeries on intersex children and recommending deferral until informed participation is possible.

  Other
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• 2017M.C. case settlement reported

  A related state-level matter was reported as settled by the Medical University of South Carolina for $440,000, without an admission of liability.

  Lawsuit
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• 2017InterACT publishes intersex media guide

  The organization released guidance intended to improve media coverage of intersex issues.

  Other
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• 2016UN Committee Against Torture raises intersex-intervention concerns

  After an InterACT submission, the committee requested a response from the United States regarding reports of medical interventions on intersex infants and children.

  RegulationOther
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• 2016InterACT issues statement favoring the term intersex

  The organization publicly supported the increasingly accepted term “intersex” rather than terminology focused on disorders of sex development.

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• 2015Fourth Circuit dismisses M.C. constitutional claim

  The appellate court reversed the district court’s refusal to dismiss the complaint on qualified-immunity grounds, while expressly declining to decide whether the surgery violated constitutional rights.

  LawsuitOther
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• 2013InterACT joins M.C. v. Aaronson lawsuit

  InterACT, the Southern Poverty Law Center, and pro bono counsel filed a federal lawsuit concerning irreversible surgery performed on an infant in state care.

  LawsuitOther
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1. InterACT
2. InterACT official website