In other classes I’ve read about Cheryl Chase and the group she created, the Intersex Society of North America (ISNA). However, I know little about the organization or why a new organization was created, the Accord Alliance. So, this week I wanna talk about the ISNA, Accord Alliance, and support groups for intersex individuals.

In Hermaphrodites and the Medical Invention of Sex, Dreger argues that some intersex patients were angry because they were not offered psychological support (200). They, and their families, had to deal with their feelings on their own (200).  Many were happy just to find out that they were not alone and not “freaks” (201).

When I googled ‘Intersex support groups’ the first thing that popped up was Chase’s group, the Intersex Society of North America. Their mission is:

The Intersex Society of North America (ISNA) is devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.

We have learned from listening to individuals and families dealing with intersex that:

  • Intersexuality is primarily a problem of stigma and trauma, not gender.
  • Parents’ distress must not be treated by surgery on the child.
  • Professional mental health care is essential.
  • Honest, complete disclosure is good medicine.
  • All children should be assigned as boy or girl, without early surgery.

ISNA seems to be a hub of information for intersex individuals. Besides their mission, the website offers the history of the group as well as some of the positive changes that have happened. For example, there has been a new standard of care created that is more patient centered, avoids misleading language, and is more cautious about surgery. The website also offers A LOT of information about law, such as how to contact Advocates for Informed Choice, as well as information about the law and sex reassignment and the rulings of recent court cases. The website offers a lot of books, videos, and bibliographies about and for intersex (or DSD) individuals.

ISNA also offers a lot of links to specific support groups, such as:

  • Androgen Insensitivity Syndrome
  • Congenital Adrenal Hyperplasia
  • General Intersex Information/Groups
  • Hypospadias
  • Klinefelter Syndrome
  • Mayer Rokitansky Kuster Hauser Syndrome
  • Mosaic Turner’s Syndrome
  • Other Resources
  • Other Support Groups
  • Polycystic Ovary Syndrome
  • Testicular Dysgenesis
  • Transgender
  • Turner Syndrome
  • XXYY

ISNA is not the only website offering resources and help to intersex individuals. There is also the Organization Intersex International ,Accord Alliance, blogs by individuals such as The Intersex Roadhouse, and many other websites.

However, what exactly is Accord Alliance? Accord Alliance was created in 2008 by ISNA and is a non-profit organization that is dedicated to improving DSD health care. It is comprised of health care and advocacy professionals. So, ISNA is no longer in opperation, it is now Accord Alliance. However, the ISNA website still exists and continues to be an invaluable source of information for intersex individuals and their families.

By Kristy Wilson