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.[1][2][3][4][5] Other notable members included Morgan Holmes, Max Beck, Howard Devore, Esther Morris Leidolf and Alice Dreger. The organization closed in June 2008,[6] and has been succeeded by a number of health, civil and human rights organizations.

Intersex Society of North America
AbbreviationISNA
Formation1993
Dissolved2008
TypeNGO
PurposeIntersex human rights
Region served
United States and Canada
Websiteisna.org

Advocacy

Physical integrity and bodily autonomy

The Phall-O-Meter satirizes clinical assessments of appropriate clitoris and penis length at birth. It is based on research published by Suzanne Kessler

ISNA stated that newborn intersex genitals should not be operated on, unless there need to be in order to maintain the child's physical health. It was (and to some extent still is) a common belief that a child's genitals needed to conform to average genitals of a male or female, so in the first 24 hours after birth, doctor's could undergo "extensive reconstructive surgery in order to avoid damage to the child's mental health"[7] (56). On the other hand, the ISNA claimed there is "no evidence that children who grow up with intersex genitals are worse off psychologically than those who are altered"[8] and that there is "no evidence that early surgery relieves parental distress"[6] They believed it to be inhuman to choose someone's genitals for them. This being said, the ISNA didn't condemn surgery in general, and believed that people with intersex should be allowed to opt for genital reconstruction, if they want to, when they can fully consent for the operations themselves.[9]

The ISNA advocated a move from what a "Concealment-Centered Model" to a Patient-Centered Model. This push was to move away from a model that teaches both that "intersex is a rare anatomical abnormality" and that there needs to be immediate surgery to normalize the child's abnormal genitals, and moved toward the idea that "intersex is a relatively common anatomical variation from the 'standard' male and female types". The attempt is to treat intersex as something that is natural, as to not ostracize the intersex community and allow people with intersex to be treated with the same ethical principles that doctors show to any other patient.[9]

The Patient-Centered Model believes that "psychological distress is a legitimate concern and should be addressed by properly trained professionals". This means that both people with intersex and family members who feel burdened in any way should seek both the help of counselors trained in sex and gender issues and the supports from a community of peers experiencing the same situation. This allows a network of support to help everyone through any trying times that might arise. The model also states that "care should be more focused on addressing stigma, not solely gender assignment and genital appearance."[6] The Model attempts to much more caring toward people with intersex.[9]

Released in August 2006, the Consensus Statement on Management of Intersex Disorders was a document published in Pediatrics that mapped out a new standard of care for people with intersex.[10] According to the ISNA, it made three ground-breaking changes that advocated a Patient-Centered Model, a cautious approach to surgery, and an attempt to get rid of misleading language, all of which were backed by the ISNA. However, the statement still permits surgeries, and both clinicians[11] and civil society organizations[12] question implementation. Intersex scholars such as Georgiann Davis[13] and Morgan Holmes[14] state that, instead, the statement retrenched medical authority over infants and children with intersex conditions.

First North American demonstration by intersex people

Members of ISNA held the first ever North American demonstration about intersex issues: a 1996 demonstration by Morgan Holmes, Max Beck and others as Hermaphrodites with Attitude outside the Annual Meeting of the American Academy of Pediatrics in Boston.[15] Georgiann Davis describes how, when the intersex movement began, "medical professional refused to engage intersex activists", and how rapidly the movement's strategy developed. "By the year 2000, Chase was delivering a plenary address to the Lawson Wilkins Pediatric Endocrine Society, a group she was once protesting against... It marked the first time an activist's perspective was solicited by organizers of a major medical conference."[16]

The 1996 demonstration is now commemorated internationally as Intersex Awareness Day.[17]

Identification documents

ISNA, like the 2013 International Intersex Forum believed that "newborns with intersex should be given a gender assignment as boy or girl".[18] Their reasoning is that they think it would be impossible to know where male ends and intersex begins or where female ends and intersex begins. They want to "make the world a safe place for intersex kids", and they believe that marking them as a third gender would exile them.[9]

Publications

ISNA published the journal Hermaphrodites with Attitude, edited by Cheryl Chase, between 1994 and 2005.[19] The first issue appeared in Winter 1994, comprising 6 pages of articles, analysis and case studies, including articles by people with lived experience, activists, doctors and academics. It was distributed to subscribers in five countries and 14 States of the United States.[20] The full archives are available online.

Language

In a significant shift from publishing a regular journal titled Hermaphrodites with Attitude and demonstrating using the same name, the last stated goal of the organization was to eradicate what the organization deemed as "misleading language".[6] The ISNA claimed that nomenclature based on hermaphroditism was stigmatizing[21] to intersex individuals, as well as potentially panic-inducing to parents of intersex children. The suggested solution put forth by the ISNA was to restructure the system of intersex taxonomy and nomenclature to not include the words 'hermaphrodite', 'hermaphroditism', 'sex reversal', or other similar terms.[22] This "standard division of many intersex types into true hermaphroditism, male pseudohermaphroditism, and female pseudohermaphroditism"[23] is described by the ISNA and its advocates as confusing and clinically problematic.[22]

The ISNA attempted to dispel what it sees as "harmful language" by providing information on intersex definitions and prevalence. The Intersex Society of North America stated that the term hermaphrodite is a "mythological term" and a "physiologic impossibility"; true hermaphrodites cannot exist.[21]

While some intersex people seek to reclaim the word "hermaphrodite" with pride to reference themselves (much like the words "dyke" and "queer" have been reclaimed by LBGT people), the ISNA suggested that be avoided. They believed that it will not help the cause of intersex rights and could in fact be counter productive as people would not understand that word is being used as an attempt to empower intersex people, not classify them.[21]

International work

ISNA made various efforts to spread intersex activism,[24] and were a resource for a 1999 Colombian court case decision on surgical guidelines for intersex children.[25]

Closure and succession

By 2008, even though ISNA felt that they were able to come to a "consensus on improvements to [medical] care" for people born intersex with a large amount of the medical community, they ran into many problems in implementing these ideas. There was a "concern among many healthcare professionals, parents, and mainstream healthcare system funders that ISNA's views are biased", and many of these people feared that they would be shunned by colleagues if it was found out they were associated with the ISNA. The ISNA gave a statement saying that "at present, the new standard of care exists as little more than ideals on paper, thus falling short of its aim[s]" to fulfill its goals.[26] The ISNA decided its best course of action was to "support a new organization with a mission to promote integrated, comprehensive approaches to care that enhance the overall health and well-being of persons [who are intersex] and their families." The ISNA transferred all of its remaining funds, assets, and copyrights to Accord Alliance and then closed.

The Accord Alliance, which opened in April 2008, is a direct successor to ISNA. Its goal is to "improve the way health care is made available" to people born intersex.[6]

Writing in Sociology of Diagnosis, Georgiann Davis describes Organisation Intersex International (OII) and ISNA as "activist organisations".[16] OII continues today with affiliates in many countries. Other intersex and DSD activist and advocacy organisations also continue their work around the world. Many of those organizations participate in the International Intersex Forum.

See also

References

  1. Re-membering a Queer Body Archived 2013-05-11 at the Wayback Machine, AISSG, syndicated copy of article from Undercurrents (May 1994: 11-13) by the Faculty of Environmental Studies, York University, Ontario.
  2. Re-membering a Queer Body, UnderCurrents (May 1994: 11-13), Faculty of Environmental Studies, York University, Ontario.
  3. Matthews, Karen (Oct 22, 2000). Debate Grows Over Using Surgery on Infants with Ambiguous Genitals. Los Angeles Times
  4. Murrell, Nancy (October 28, 1998). Intersex group raises questions about genital surgery. Miami Herald
  5. Hackford-Peer, Kim (2005). Cheryl Chase Founds the Intersex Society of North America. in GLBT History, 1993-2004; 2005, p28-30, 2p
  6. Staff report (June 28, 2008). Farewell message. via ISNA.org
  7. "Fausto-Sterling, Anne "Of Gender and Genitals" from Sexing the body: gender politics and the construction of sexuality New York, NY: Basic Books, 2000, [Chapter 3, pp. 44-77]" (PDF). Retrieved 2014-06-29.
  8. "What's wrong with the way intersex has traditionally been treated?". Intersex Society of North America. 2004-01-22. Retrieved 2014-06-29.
  9. "Shifting the Paradigm of Intersex Treatment". Intersex Society of North America. Retrieved 2014-06-29.
  10. Lee PA, Houk CP, Ahmed SF, Hughes IA (August 2006). "Consensus statement on management of intersex disorders. International Consensus Conference on Intersex". Pediatrics. 118 (2): e488–500. doi:10.1542/peds.2006-0738. PMC 2082839. PMID 16882788.
  11. Creighton, Sarah M.; Michala, Lina; Mushtaq, Imran; Yaron, Michal (January 2, 2014). "Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same?" (PDF). Psychology and Sexuality. 5 (1): 34–43. doi:10.1080/19419899.2013.831214. ISSN 1941-9899.
  12. 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).
  13. Davis, Georgiann (2011). McGann, PJ; Hutson, David J. (eds.). "DSD is a Perfectly Fine Term": Reasserting Medical Authority through a Shift in Intersex Terminology". Sociology of Diagnosis (Advances in Medical Sociology). 12: 155–182.
  14. Holmes, Morgan (2011). "The Intersex Enchiridion: Naming and Knowledge in the Clinic". Somatechnics. 1 (2): 87–114. doi:10.3366/soma.2011.0026.
  15. Hermaphrodites with Attitude Take to the Streets, Intersex Society of North America, October 1996
  16. "DSD is a Perfectly Fine Term": Reasserting Medical Authority through a Shift in Intersex Terminology, Georgiann Davis (2011), in PJ McGann, David J. Hutson (ed.) Sociology of Diagnosis (Advances in Medical Sociology, Volume 12), Emerald Group Publishing Limited, pp.155-182.
  17. "The 14 days of intersex". Star Observer. 2011-10-25. Retrieved 11 October 2012.
  18. "What does ISNA recommend for children with intersex?". Intersex Society of North America. Retrieved 2014-06-29.
  19. "Hermaphrodites with Attitude". Intersex Society of North America. Retrieved 26 September 2013.
  20. "Hermaphrodites with Attitude" (PDF). Hermaphrodites with Attitude. 1 (1). 1994.
  21. "Is a person who is intersex a hermaphrodite?". Intersex Society of North America. Retrieved 2014-06-29.
  22. "Getting Rid of "Hermaphroditism" Once and For All". Intersex Society of North America. Retrieved 2014-06-29.
  23. Dreger AD, Chase C, Sousa A, Gruppuso PA, Frader J (August 2005). "Changing the nomenclature/taxonomy for intersex: a scientific and clinical rationale". Journal of Pediatric Endocrinology & Metabolism. 18 (8): 729–33. doi:10.1515/jpem.2005.18.8.729. PMID 16200837.
  24. "Intersex Society of North America (ISNA)". Gay Alliance. Archived from the original on 2015-03-10. Retrieved 2014-06-29.
  25. "Case 1 Part I (Sentencia SU-337/99)".
  26. "Dear ISNA Friends and Supporters". Intersex Society of North America. Retrieved 2014-06-29.
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