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 represent the interest of intersex people. [need quotation to verify] Their objective was to end shame, secrecy, and unwanted genital surgeries.[need quotation to verify] The organization ended in June 2008.
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. The organization closed in 2008, and its 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.
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. 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
The ISNA advocated a move from what is called the Concealment-Centered Model to the 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 need 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 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 people with intersex and family members who feel burdened in anyway should seek both the help of counselors trained in sex and gender issues and supports form 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 focussed on addressing stigma, not solely gender assignment and genital appearance." The Model attempts to much more caring toward people with intersex.
While some, like Dr. Anne Fausto-Sterling, see this new model that focus mainly on the interests of the patient as a opportunity to move away “from an era of sexual dimorphism to one of variety beyond the number two” (77), the ISNA still believes that “newborns with intersex should be given a gender assignment as boy or girl”. There reasoning is that and they think it would be impossible to know where male ends and intersex begins or where female ends and intersex begins and 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.
Surgery and Intersex
With surgery, the ISNA wants to make it abundantly 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” (56). On the other hand, the ISNA claims there is "no evidence that children who grow up with intersex genitals are worse off psychologically than those who are altered" and that there is "no evidence that early surgery relieves parental distress" They believe it to be inhuman to choice someone's genitals for them. This being said, the ISNA doesn't condone surgery in general, and believes 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.
Emphasis on Language
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 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. This "standard division of many intersex types into true hermaphroditism, male pseudohermaphroditism, and female pseudohermaphroditism" is described by the ISNA and its advocates as confusing and clinically problematic.
The ISNA attempts to dispel what it sees as "harmful language" by providing information on Intersex definitions and prevalence. The Intersex Society of North America states that the term hermaphrodite is a "mythological term" and is a "physiologic impossibility". A further explanation is given by the ISNA website stating that a true hermaphrodite would be an individual being both fully male and fully female, but the ISNA states that true hermaphrodite’s 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 suggests that be avoided. They believe that it will not help the cause of intersex rights and could in fact be counter productive as people will not understand that word is being used as an attempt to empower intersex people, not classify them.
Intersex in the Sex Anatomy Spectrum
The Intersex Society of North America claims 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 lists ambiguous genitalia as a commonly cited case of intersex, but there exist variations of lesser degree. The ISNA claims that intersex anatomy is not always present at birth, and not manifest until the child hits puberty. Considering the wide range of variations that are considered intersex, as well as the ISNA’s perceived socially-constructed nature of gender and biological sex, the ISNA places intersex within a sex anatomy spectrum. The ISNA's argument is 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.
The frequently asked questions about the Intersex Society of North America and biologist Anne Fausto-Sterlings "Of Gender and Genitals" both note how common intersex is. In one answer on the FAQ's it states that intersex is as common as "1 in 1500 to 1 in 2000 births" and in "Of Gender and Genitals" it states that albino births "occur less frequently than intersexual births". According to Anne Sterling, many male's are born with their "meatus" or "pee-hole" located in many different locations, rather than at the tip where it's supposed to be located, and so "many never knew they had been urinating from the wrong place their entire lives." This as an example of why some would think albino births are more common than intersex births, because when a person is albino its a feature that you can notice on sight but you could see a dozen humans that fit into the term intersex and never even know it.
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. 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, an organization that opened in April 2008, who's goal is to “improve the way health care is made available” to people born intersex. Following this course of action, the ISNA closed.
- Hackford-Peer, Kim (2005). Cheryl Chase Founds the Intersex Society of North America. in GLBT History, 1993-2004; 2005, p28-30, 2p
- Matthews, Karen (Oct 22, 2000). Debate Grows Over Using Surgery on Infants with Ambiguous Genitals. Los Angeles Times
- Murrell, Nancy (October 28, 1998). Intersex group raises questions about genital surgery. Miami Herald
- Staff report (June 28, 2008). Farewell message. via ISNA.org
- http://www.accordalliance.org/ "Welcome to Accord Alliance
- "Case 1 Part I (Sentencia SU-337/99)".
- "Shifting the Paradigm of Intersex Treatment"
- 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]
- "What does ISNA recommend for children with intersex?"
- http://www.isna.org/faq/concealment "What's wrong with the way intersex has traditionally been treated?"
- "How common is Intersex?"