InterACT

Last updated
interACT
Advocates for Intersex Youth
Founded2006;18 years ago (2006)
Founder Anne Tamar-Mattis
27-2947576 [1]
Legal status 501(c)(3) nonprofit organization [2]
PurposeTo advocate for the civil rights of children with intersex variations
Headquarters Sudbury, Massachusetts, U.S. [1]
Coordinates 42°21′43″N71°25′00″W / 42.361916°N 71.416715°W / 42.361916; -71.416715
Area served
United States
Kimberly Zieselman
Legal Director
Anne Tamar-Mattis
Revenue (2016)
$233,756 [1]
Expenses (2016)$295,886 [1]
Employees (2016)
7 [1]
Volunteers (2016)
57 [1]
Website www.interactadvocates.org
Formerly called
Advocates for Informed Choice

Advocates for Informed Choice, dba interACT or interACT Advocates for Intersex Youth, [3] is a 501(c)(3) nonprofit organization advocating for the legal and human rights of children with intersex traits. The organization was founded in 2006 [4] and formally incorporated on April 12, 2010. [5]

Contents

History and structure

interACT was founded in 2006 in Cotati, California. [4] [6] 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. [7] Staff members include Kimberly Zieselman, JD, [8] 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" [9]

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, insurance, identity documents, school accommodation, discrimination, medical records retrieval, adoption, military service, medical privacy, refugee asylum, and wider international human rights. [10] [11] [12]

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. [13] 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. [14] [15] 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". [16]

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. [17] [18] 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." [19] 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." [17] [18] [19]

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. [20] [21] [22] [23] [24] [25]

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." [26] The Court did not rule on whether or not the surgery violated M.C.'s constitutional rights. [27] State suits were subsequently filed. [26] 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. [28]

Youth leadership development

interACT Youth [29] 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" [30] 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.

In 2013, the then youth leadership coordinator, [31] Pidgeon Pagonis, testified for interACT before the Inter-American Commission on Human Rights about the medical interventions they were subjected to as an intersex child, [32] alongside Latin Americans Mauro Cabral, Natasha Jiménez and Paula Machado. [33]

Media work

interACT has worked with MTV on the program Faking It , notable for providing the first intersex main character in a television show, [34] and television's first intersex character played by an intersex actor. [35] In 2017, interACT began working with Belgian-born model Hanne Gaby Odiele to tackle social taboos and unnecessary surgeries. [36] [37]

interACT published a media guide on covering intersex issues in January 2017. [38]

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. [39]

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." [40] [41]

Interface Project

The Interface Project is a tax-exempt 501(c)(3) nonprofit operating under the fiscal sponsorship 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. [42]

See also

Related Research Articles

<span class="mw-page-title-main">Intersex Awareness Day</span> Awareness day observed annually on October 26

Intersex Awareness Day is an internationally observed awareness day each October 26, designed to highlight human rights issues faced by intersex people.

<i>Intersexion</i> 2012 New Zealand film

Intersexion (2012) is a documentary about intersex people. The film was researched and presented by activist Mani Mitchell, New Zealand's first "out" intersex person. It was written, directed and edited by Grant Lahood and produced by John Keir.

Anne Tamar-Mattis is an American attorney, human rights advocate, and founder of interACT. She currently serves as interACT's Legal Director.

<span class="mw-page-title-main">International Intersex Forum</span>

The International Intersex Forum is an annual event organised, then later supported, by the ILGA and ILGA-Europe that and organisations from multiple regions of the world, and it is believed to be the first and only such intersex event.

<span class="mw-page-title-main">Intersex human rights</span> Human rights for intersex people

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."

Sean Saifa Wall is an African-American researcher, and long-time advocate for intersex rights. He is a queer, transgender, and intersex man of color and former president of Interact Advocates for Intersex Youth. He approaches his work to end intersex oppression through an intersectional lens.

<span class="mw-page-title-main">Discrimination against intersex people</span>

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". "Because their bodies are seen as different, intersex children and adults are often stigmatized and subjected to multiple human rights violations".

<span class="mw-page-title-main">Pidgeon Pagonis</span> American activist, writer, artist, and consultant

Pidgeon Pagonis is an American intersex activist, writer, artist, and consultant. They are an advocate for intersex human rights and against nonconsensual intersex medical interventions.

<span class="mw-page-title-main">Intersex and LGBT</span> Relationship between different sex and gender minorities

Intersex people are born with sex characteristics that "do not fit the typical definitions for male or female bodies". They are substantially more likely to identify as lesbian, gay, bisexual, or transgender (LGBT) than endosex people. According to a study done in Australia of Australian citizens with intersex conditions, participants labeled 'heterosexual' as the most popular single label with the rest being scattered among various other labels. According to another study, an estimated 8.5% to 20% experiencing gender dysphoria. Although many intersex people are heterosexual and cisgender, this overlap and "shared experiences of harm arising from dominant societal sex and gender norms" has led to intersex people often being included under the LGBT umbrella, with the acronym sometimes expanded to LGBTI. Some intersex activists and organisations have criticised this inclusion as distracting from intersex-specific issues such as involuntary medical interventions.

<span class="mw-page-title-main">Timeline of intersex history</span> Overview of notable events in the timeline of intersex history

The following is a timeline of intersex history.

<span class="mw-page-title-main">Intersex rights in Australia</span> Overview of intersex peoples rights in Australia

Intersex rights in Australia are protections and rights afforded to intersex people through statutes, regulations, and international human rights treaties, including through the Sex Discrimination Act 1984 (Cth) which makes it unlawful to discriminate against a person based upon that person's intersex status in contexts such as work, education, provision of services, and accommodation.

<span class="mw-page-title-main">Intersex rights in the United States</span> Overview of intersex peoples rights in the United States of America

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 by intersex civil society organizations aim to eliminate harmful practices, promote social acceptance, and equality. In recent years, intersex activists have also secured some forms of legal recognition. Since April 11, 2022 US Passports give the sex/gender options of male, female and X by self determination.

<span class="mw-page-title-main">Malta declaration (International Intersex Forum)</span> Statement of the Third International Intersex Forum, which took place in Valletta, Malta, in 2013

The Malta declaration is the statement of the Third International Intersex Forum, which took place in Valletta, Malta, in 2013. The event was supported by the ILGA and ILGA-Europe and brought together 34 people representing 30 organisations from multiple regions of the world.

<span class="mw-page-title-main">Intersex rights in South Africa</span> Overview of intersex peoples rights in South Africa

Intersex people in South Africa have some of the same rights as other people, but with significant gaps in protection from non-consensual cosmetic medical interventions and protection from discrimination. The country was the first to explicitly include intersex people in anti-discrimination law.

<span class="mw-page-title-main">Intersex rights in the United Kingdom</span> Overview of intersex peoples rights in the United Kingdom

Intersex people in the United Kingdom face significant gaps in legal protections, particularly in protection from non-consensual medical interventions, and protection from discrimination. Actions by intersex civil society organisations aim to eliminate unnecessary medical interventions and harmful practices, promote social acceptance, and equality in line with Council of Europe and United Nations demands. Intersex civil society organisations campaign for greater social acceptance, understanding of issues of bodily autonomy, and recognition of the human rights of intersex people.

<span class="mw-page-title-main">Intersex human rights reports</span>

Intersex people are born with sex characteristics, such as chromosomes, gonads, hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.

<span class="mw-page-title-main">Intersex rights in Argentina</span>

Intersex people in Argentina have no recognition of their rights to physical integrity and bodily autonomy, and no specific protections from discrimination on the basis of sex characteristics. Cases also exist of children being denied access to birth certificates without their parents consenting to medical interventions. The National Institute Against Discrimination, Xenophobia and Racism and civil society organizations such as Justicia Intersex have called for the prohibition of unnecessary medical interventions and access to redress.

<span class="mw-page-title-main">Genetic diagnosis of intersex</span>

Intersex people are born with natural variations in physical and sex characteristics including those of the chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female. Preimplantation genetic diagnosis allows the elimination of embryos and fetuses with intersex traits and thus has an impact on discrimination against intersex people.

Kimberly Zieselman is an attorney, human rights advocate, author, and intersex woman, with androgen insensitivity syndrome. She currently serves as executive director of interACT, and is a signatory of the Yogyakarta Principles plus 10. In 2020, her memoir XOXY was published.

References

  1. 1 2 3 4 5 6 "Form 990: Return of Organization Exempt from Income Tax". Advocates for Informed Choice dba interACT. Guidestar. December 31, 2016.
  2. ↑ "Advocates for Informed Choice". Exempt Organizations Select Check. Internal Revenue Service. Retrieved March 20, 2018.
  3. ↑ "Mission and History". interACT. 2016. Retrieved February 6, 2016.
  4. 1 2 "AIC's Mission". aiclegal.org. Retrieved 22 May 2013.
  5. ↑ "C3290401 Advocates for Informed Choice Archived 2021-05-02 at the Wayback Machine ". Business Search. Office of the Secretary of State of California. Retrieved March 20, 2018.
  6. ↑ "Resolve: Healing the Legacy of Intersex/DSD Treatment". Ashoka: Innovators for the Public . 2012. Archived from the original on 2016-03-04. Retrieved 2015-10-19.
  7. ↑ "Our Board of Directors". interACT. Retrieved February 6, 2016.
  8. ↑ "AIC announces transition & staff changes". Advocates for Informed Choice Blog. Advocates for Informed Choice. July 8, 2014. Archived from the original on September 13, 2014. Retrieved July 8, 2014.
  9. ↑ "Intersex Society of North America".
  10. ↑ "AIC: What we do". Archived from the original on July 3, 2013. Retrieved May 23, 2013.
  11. ↑ Tamar-Mattis, Anne (December 10, 2012). "Report to the UN Special Rapporteur on Torture: Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment" (PDF) (Press release). AIC. Retrieved May 23, 2013.
  12. ↑ Tamar-Mattis, Anne (April 19, 2012). "Sterilization and Minors with Intersex Conditions in California Law". California Law Review. Archived from the original on November 14, 2015. Retrieved October 19, 2015.
  13. ↑ Tamar-Mattis, Anne (2014). "Medical Treatment of People with intersex conditions as Torture and cruel, inhuman, or Degrading Treatment or Punishment". In Center for Human Rights & Humanitarian Law; Washington College of Law; American University (eds.). Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report. Washington, D.C.: Center for Human Rights & Humanitarian Law. pp. 91–104. Archived from the original on March 14, 2016. Retrieved May 20, 2016.
  14. ↑ interACT (June 2016). "Recommendations from interACT: Advocates for Intersex Youth regarding the List of Issues for the United States for the 59th Session of the Committee Against Torture" (PDF). Archived from the original (PDF) on 2019-04-12. Retrieved 2017-02-21.
  15. ↑ United Nations; Committee against Torture (December 2016). "List of issues prior to submission of the sixth periodic report of the United States of America".
  16. ↑ interACT (June 2016). Recommendations from interACT: Advocates for Intersex Youth regarding the List of Issues for the United States for the 59th Session of the Committee Against Torture (PDF). Archived from the original (PDF) on 2019-04-12. Retrieved 2017-02-21.
  17. 1 2 Human Rights Watch (July 25, 2017). "US: Harmful Surgery on Intersex Children". Human Rights Watch. Retrieved July 25, 2017.
  18. 1 2 Stewart, Philippa (July 25, 2017). "Interview: Intersex Babies Don't Need 'Fixing'". Human Rights Watch. Retrieved July 25, 2017.
  19. 1 2 Human Rights Watch; interACT (July 2017). I Want to Be Like Nature Made Me. Human Rights Watch. ISBN   978-1-62313-502-7.
  20. ↑ "AIC's Groundbreaking Lawsuit Accuses South Carolina, Doctors and Hospitals of Performing Unnecessary Surgery on Infant". Advocates for Informed Choice. Retrieved 22 May 2013.
  21. ↑ "Groundbreaking SPLC lawsuit accuses South Carolina, doctors and hospitals of unnecessary surgery on infant". Southern Poverty Law Center . May 14, 2013. Retrieved May 22, 2013.
  22. ↑ Sesana, Laura (May 18, 2013). "Adoptive parents sue over son's sex-assignment surgery". The Washington Times. Retrieved May 22, 2013.
  23. ↑ "Sex change surgery performed on 16-month-old South Carolina child without consent". Daily Kos.
  24. ↑ "Lawsuit Filed Over Unnecessary Surgery on Intersex Baby". www.advocate.com. 14 May 2013.
  25. ↑ Hospital Sued For Performing Unneeded Sex-Assignment Surgery on Baby Archived June 6, 2013, at the Wayback Machine
  26. 1 2 Largent, Emily (March 5, 2015). "M.C. v. Aaronson". Petrie-Flom Center, Harvard Law.
  27. ↑ interACT (January 27, 2015). "Update on M.C.'s Case – The Road to Justice can be Long, but there is more than one path for M.C." Archived from the original on February 19, 2017. Retrieved February 18, 2017.
  28. ↑ Ghorayshi, Azeen (July 27, 2017). "A Landmark Lawsuit About An Intersex Baby's Genital Surgery Just Settled For $440,000". BuzzFeed. Retrieved July 28, 2017.
  29. ↑ "interACT Youth". Archived from the original on October 26, 2014.{{cite web}}: CS1 maint: unfit URL (link)
  30. ↑ http://aiclegal.files.wordpress.com/2012/10/interact_ms-updated.pdf [ bare URL PDF ]
  31. ↑ Hilary Weaver (August 10, 2016). "Meet Chicago's White-House-Honored Intersex Activist, Pidgeon Pagonis". Paper . Retrieved January 8, 2017.
  32. ↑ "The Pursuit of Happiness in Our Original Beautiful Bodies: Pidgeon Pagonis' Recent Testimony before the Inter-American Commission on Human Rights". interACT. April 8, 2013. Retrieved January 8, 2017.
  33. ↑ Comisión Interamericana de Derechos Humanos (November 2015), Violencia contra Personas Lesbianas, Gays, Bisexuales, Trans e Intersex en América (PDF), Inter-American Commission on Human Rights
  34. ↑ "Meet television's groundbreaking intersex character". Buzzfeed. 24 September 2014.
  35. ↑ ""Faking It" Breaks New Ground With First Intersex Actor To Play Intersex Character On TV". New Now Next. Retrieved April 5, 2016.
  36. ↑ Miller, Susan (January 23, 2017). "Model Hanne Gaby Odiele reveals she is intersex". USA Today .
  37. ↑ "International Fashion Model Hanne Gaby Odiele Reveals She is Intersex: Announces Partnership with interACT Advocates for Intersex Youth to Raise Awareness About the Importance of Human Rights Protections for Intersex People Worldwide" (PDF). interACT. January 23, 2017.
  38. ↑ interACT (January 2017), Media Guide, Covering the Intersex Community (PDF)
  39. ↑ interACT (May 2016). "interACT Statement on Intersex Terminology". interACT.
  40. ↑ "California's SB 201 for Intersex Autonomy | interactadvocates". 4 February 2019. Retrieved 2019-04-19.
  41. ↑ "Senate Bill 201".
  42. ↑ "The Interface Project". The Interface Project. 2012.
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