Intersex Society of North America

{{Short description|Advocacy group for intersex people in the U.S. and Canada}}

{{Infobox organization

|name = Intersex Society of North America

|image = File:Intersex Society of North America logo.png

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|abbreviation = ISNA

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|formation = 1993

|dissolved = 2008

|type = NGO

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|purpose = Intersex human rights

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|region_served = United States and Canada

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|website = {{url|http://isna.org}}

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The Intersex Society of North America (ISNA) was a non-profit advocacy group founded in 1993 by Cheryl Chase to end shame, secrecy, and unnecessary genital surgeries on intersex people.[http://www.aissg.org/articles/HOLMES.HTM Re-membering a Queer Body] {{Webarchive|url=https://web.archive.org/web/20130511182712/http://www.aissg.org/articles/HOLMES.HTM |date=2013-05-11 }}, AISSG, syndicated copy of article from Undercurrents (May 1994: 11–13) by the Faculty of Environmental Studies, York University, Ontario.[http://pi.library.yorku.ca/ojs/index.php/currents/article/view/37695/34194 Re-membering a Queer Body] {{Webarchive|url=https://web.archive.org/web/20131230235845/http://pi.library.yorku.ca/ojs/index.php/currents/article/view/37695/34194 |date=2013-12-30 }}, UnderCurrents (May 1994: 11–13), Faculty of Environmental Studies, York University, Ontario.Matthews, Karen (Oct 22, 2000). Debate Grows Over Using Surgery on Infants with Ambiguous Genitals. Los Angeles TimesMurrell, Nancy (October 28, 1998). Intersex group raises questions about genital surgery. Miami HeraldHackford-Peer, Kim (2005). Cheryl Chase Founds the Intersex Society of North America. in GLBT History, 1993–2004; 2005, p28-30, 2p Other notable members included Morgan Holmes, Max Beck, Howard (Tiger) Devore, Esther Morris Leidolf and Alice Dreger. The organization closed in June 2008,Staff report (June 28, 2008). [http://www.isna.org/farewell_message Farewell message.] {{Webarchive|url=https://web.archive.org/web/20080803054856/http://www.isna.org/farewell_message |date=2008-08-03 }} via ISNA.org and has been succeeded by a number of health, civil and human rights organizations including interACT.{{Cite web | title = Intersex Society of North America | url = http://isna.org/}}

Advocacy

=Physical integrity and bodily autonomy=

File:Phall-O-meter%27, Intersex Society of North Wellcome L0031936.jpg 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 they 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, doctors could perform "extensive reconstructive surgery in order to avoid damage to the child's mental health"{{cite web|url=https://eee.uci.edu/13f/32555/home/01.+Sterling+-+Of+Gender+and+Genitals.pdf |title=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] |access-date=2014-06-29}} (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"{{cite web |url=http://www.isna.org/faq/concealment |title=What's wrong with the way intersex has traditionally been treated? |publisher=Intersex Society of North America |date=2004-01-22 |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20140626004731/http://www.isna.org/faq/concealment |archive-date=2014-06-26 |url-status=live }} and that there is "no evidence that early surgery relieves parental distress". They believed it to be inhumane to choose someone's genitals for them. This being said, the ISNA did not condemn surgery in general, and believed that intersex people should be allowed to opt for genital reconstruction, if they want to, when they can fully consent to the operations themselves.{{cite web |url=http://www.isna.org/compare |title=Shifting the Paradigm of Intersex Treatment |last=Dreger |first=Alice |author-link=Alice Dreger |publisher=Intersex Society of North America |access-date=January 12, 2021 |archive-url=https://web.archive.org/web/20140626010402/http://www.isna.org/compare |archive-date=2014-06-26 |url-status=live}}

Alice Dreger has described how the work of clinical psychologist and surgeries survivor Tiger Devore was integral to the work of ISNA:

{{quotation|Devore contributed to ISNA and to the intersex rights movement the outline of what a reformed clinical system would look like: Intersex children would be given preliminary gender assignments as boys and girls (recognizing that all gender assignment is preliminary and does not require surgery); hormonal and surgical interventions would be limited to those that were needed to treat clear and present medical problems, with all elective interventions waiting until patients could consent for themselves; intersex children and adults (and their loved ones) would be provided professional, non-shaming psychosocial support and peer support.{{Cite book| publisher = Cambridge University Press| isbn = 978-1-316-34319-7| pages = 55–73| last = Dreger| first = Alice| author-link = Alice Dreger | title = Bioethics in Action| chapter = Twenty Years of Working toward Intersex Rights| date = May 2018| doi = 10.1017/9781316343197.004}}}}

The ISNA advocated a move from 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 to allow intersex people to be treated with the same ethical principles that doctors show to any other patient.

The Patient-Centered Model believes that "psychological distress is a legitimate concern and should be addressed by properly trained professionals". This means that both intersex people and family members who feel burdened in any way should seek both the help of counselors trained in sex and gender issues and the support 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." The Model attempts a more caring approach toward people with intersex characteristics.

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 intersex people.{{cite journal |title=Consensus statement on management of intersex disorders. International Consensus Conference on Intersex |journal=Pediatrics |volume=118 |issue=2 |pages=e488–500 |date=August 2006 |pmid=16882788 |doi=10.1542/peds.2006-0738|pmc=2082839 |last1=Lee |first1=P. A. |last2=Houk |first2=C. P. |last3=Ahmed |first3=S. F. |last4=Hughes |first4=I. A. }} 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{{Cite journal| doi = 10.1080/19419899.2013.831214| issn = 1941-9899| volume = 5| issue = 1| pages = 34–43| last1 = Creighton| first1 = Sarah M.| last2 = Michala| first2 = Lina| last3 = Mushtaq| first3 = Imran| last4 = Yaron| first4 = Michal| s2cid = 89605693| title = Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same?| journal = Psychology and Sexuality| date = January 2, 2014| url = http://discovery.ucl.ac.uk/1415959/1/Creighton_Childhood_surgery.pdf| access-date = February 7, 2019| archive-url = https://web.archive.org/web/20180719102451/http://discovery.ucl.ac.uk/1415959/1/Creighton_Childhood_surgery.pdf| archive-date = July 19, 2018| url-status = live| doi-access = free}} and civil society organizations{{Cite web| last = interACT| author-link = Interact Advocates for Intersex Youth| title = 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| date = June 2016| url = http://tbinternet.ohchr.org/Treaties/CAT/Shared%20Documents/USA/INT_CAT_ICS_USA_24552_E.pdf| access-date = 2017-02-14| archive-url = https://web.archive.org/web/20170104000043/http://tbinternet.ohchr.org/Treaties/CAT/Shared%20Documents/USA/INT_CAT_ICS_USA_24552_E.pdf| archive-date = 2017-01-04| url-status = live}} question implementation. Intersex scholars such as Georgiann Davis{{cite journal |url=http://www.emeraldinsight.com/books.htm?chapterid=1943090 |first=Georgiann |last=Davis |author-link=Georgiann Davis |date=2011 |title=DSD is a Perfectly Fine Term": Reasserting Medical Authority through a Shift in Intersex Terminology |editor1-first=PJ |editor1-last=McGann |editor2-first=David J. |editor2-last=Hutson |journal=Sociology of Diagnosis (Advances in Medical Sociology) |series=Advances in Medical Sociology |volume=12 |pages=155–182 |doi=10.1108/S1057-6290(2011)0000012012 |isbn=978-0-85724-575-5 |access-date=2014-01-09 |archive-url=https://web.archive.org/web/20131110225916/http://www.emeraldinsight.com/books.htm?chapterid=1943090 |archive-date=2013-11-10 |url-status=live |url-access=subscription }} and Morgan Holmes{{cite journal | year = 2011| title = The Intersex Enchiridion: Naming and Knowledge in the Clinic | journal = Somatechnics | volume = 1 | issue = 2| pages = 87–114 | doi = 10.3366/soma.2011.0026 | last1 = Holmes| first1 = Morgan|author-link = Morgan Holmes}} 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.{{cite web |url=http://www.isna.org/books/chrysalis/beck |title=Hermaphrodites with Attitude Take to the Streets |last=Beck |first=Max |author-link=Max Beck |publisher=Intersex Society of North America |url-status=live |archive-url=https://web.archive.org/web/20151005043221/http://www.isna.org/books/chrysalis/beck |archive-date=2015-10-05}} 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."{{cite web |url=http://www.emeraldinsight.com/books.htm?chapterid=1943090 |title="DSD is a Perfectly Fine Term": Reasserting Medical Authority through a Shift in Intersex Terminology |access-date=2021-01-12 |archive-url=https://web.archive.org/web/20131110225916/http://www.emeraldinsight.com/books.htm?chapterid=1943090 |archive-date=2013-11-10 |df=mdy-all}}

The 1996 demonstration is now commemorated internationally as Intersex Awareness Day.{{cite web | title = The 14 days of intersex | publisher = Star Observer | url = http://www.starobserver.com.au/opinion/2011/10/25/the-14-days-of-intersex/64300 | access-date = 11 October 2012 | date = 2011-10-25 | archive-url = https://web.archive.org/web/20120622105212/http://www.starobserver.com.au/opinion/2011/10/25/the-14-days-of-intersex/64300 | archive-date = 22 June 2012 | url-status = live }}

=Identification documents=

ISNA, like the 2013 International Intersex Forum believed that "newborns with intersex should be given a gender assignment as boy or girl".{{cite web |url=http://www.isna.org/faq/patient-centered |title=What does ISNA recommend for children with intersex? |publisher=Intersex Society of North America |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20140625191830/http://www.isna.org/faq/patient-centered |archive-date=2014-06-25 |url-status=live }} 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.

=Publications=

ISNA published the journal Hermaphrodites with Attitude, edited by Cheryl Chase, between 1994 and 2005.{{cite web|title=Hermaphrodites with Attitude|url=http://www.isna.org/library/hwa|publisher=Intersex Society of North America|access-date=26 September 2013|archive-url=https://web.archive.org/web/20130814041832/http://www.isna.org/library/hwa|archive-date=14 August 2013|url-status=dead}} The first issue appeared in Winter 1994, containing six 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.{{cite journal | journal = Hermaphrodites with Attitude | title = Hermaphrodites with Attitude | volume = 1 | issue = 1 | date = 1994 | url = http://www.isna.org/files/hwa/winter1995.pdf | access-date = 2017-04-17 | archive-url = https://web.archive.org/web/20160910052757/http://www.isna.org/files/hwa/winter1995.pdf | archive-date = 2016-09-10 | url-status = live }}

=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". The ISNA claimed that nomenclature based on hermaphroditism was stigmatizing{{cite web |url=http://www.isna.org/faq/hermaphrodite |title=Is a person who is intersex a hermaphrodite? |publisher=Intersex Society of North America |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20130701061246/http://www.isna.org/faq/hermaphrodite |archive-date=2013-07-01 |url-status=dead }} 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.{{cite web |url=http://www.isna.org/node/979 |title=Getting Rid of "Hermaphroditism" Once and For All |publisher=Intersex Society of North America |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20180103173537/http://www.isna.org/node/979 |archive-date=2018-01-03 |url-status=live }} This "standard division of many intersex types into true hermaphroditism, male pseudohermaphroditism, and female pseudohermaphroditism"{{cite journal |vauthors=Dreger AD, Chase C, Sousa A, Gruppuso PA, Frader J |title=Changing the nomenclature/taxonomy for intersex: a scientific and clinical rationale |journal=Journal of Pediatric Endocrinology & Metabolism |volume=18 |issue=8 |pages=729–33 |date=August 2005 |pmid=16200837 |doi=10.1515/jpem.2005.18.8.729|s2cid=39459050 }} is described by the ISNA and its advocates as confusing and clinically problematic.

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.

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.

=International work=

ISNA made various efforts to spread intersex activism,{{cite web|url=http://www.gayalliance.org/directory/intersex-society-of-north-america-isna.html |title=Intersex Society of North America (ISNA) |publisher=Gay Alliance |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20150310203029/http://www.gayalliance.org/directory/intersex-society-of-north-america-isna.html |archive-date=2015-03-10 |url-status=dead }} and were a resource for a 1999 Colombian court case decision on surgical guidelines for intersex children.{{cite web|title=Case 1 Part I (Sentencia SU-337/99)|url=http://www.isna.org/node/166|access-date=2012-12-02|archive-url=https://web.archive.org/web/20120711213537/http://www.isna.org/node/166|archive-date=2012-07-11|url-status=live}}

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.{{cite web |url=http://www.isna.org/farewell_message |title=Dear ISNA Friends and Supporters |publisher=Intersex Society of North America |access-date=2014-06-29 |archive-url=https://web.archive.org/web/20140625050346/http://www.isna.org/farewell_message |archive-date=2014-06-25 |url-status=live }} 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 website identifies interACT as a successor, and the organization charged with preserving the site as a "historical archive". The Accord Alliance, which opened in April 2008, was also a successor to ISNA.

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