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, Howard Devore and Alice Dreger. The organization closed in June 2008.^[6]

ISNA later sought to promote the term disorders of sex development, and in 2006 released Clinical Guidelines for the Management of Disorders of Sex Development in Childhood. ISNA's founder Cheryl Chase moved on to help found Accord Alliance, an organization set up to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by intersex (disorders of sex development), by promoting collaboration and shared decision-making between patients, families, clinicians, and researchers interested in improving care and health outcomes.^[7]

Intersex in the Sex Anatomy Spectrum

The Intersex Society of North America claimed that intersex is a socially constructed label that reflects actual biological variation. These variations range from chromosomal deviations from the standard male or female body, to deviations in reproductive organs that may or may not be visually expressed, to hormonal variations. The ISNA listed ambiguous genitalia as a commonly cited case of intersex, but there exist variations of lesser degree.^[8] The ISNA claimed that intersex anatomy is not always present at birth, and not manifest until the child hits puberty.^[8] Considering the wide range of variations that are considered intersex, as well as ISNA’s perceived socially-constructed nature of gender and biological sex, the ISNA placed intersex within a sex anatomy spectrum. ISNA's argument was that intersex individuals can be thought of as being on a spectrum or continuum, in which there are no clear demarcations of where male ends and female begins.^[8]

Patient-Centered Model

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]

Birth registrations and a third gender

ISNA, like the 2013 International Intersex Forum believed that “newborns with intersex should be given a gender assignment as boy or girl”.^[10] 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]

Surgery and Intersex

With surgery, the ISNA wanted to make it clear 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”^[11] (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"^[12] 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 condone 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]

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.^[13] 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."^[14]

The 1996 demonstration is now commemorated internationally as Intersex Awareness Day.^[15]

Language

In a significant shift from demonstrating as Hermaphrodites with Attitude, 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^[16] 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.^[17] This "standard division of many intersex types into true hermaphroditism, male pseudohermaphroditism, and female pseudohermaphroditism"^[18] is described by the ISNA and its advocates as confusing and clinically problematic.^[17]

Hermaphroditism

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 hermaphrodite’s cannot exist.^[16]

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.^[16]

ISNA and the Consensus Statement on Management of Intersex Disorders

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.^[19] 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.

International activism

ISNA made various efforts to spread intersex activism,^[20] and were a resource for the Colombian court case decision on the surgical guidelines for intersex children.^[21]

ISNA closes

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.^[22] 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.

Successor organizations

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".^[14] 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

• Accord Alliance
• Intersex Awareness Day
• International Intersex Forum
• List of intersex organizations

References

External links

• Intersex Society of North America
• Accord Alliance