On Lee and Houk: “The Role of Support Groups, Advocacy Groups, and Other Interested Parties in Improving the Care of Patients with Congenital Adrenal Hyperplasia: Pleas and Warnings”

The rapid progression of intersex medicalization since the mid-1950s has directly influenced the development of intersex support and advocacy groups. These have a significant presence on the internet and many, such as OII also have a physical presence in countries that have set up affiliate organizations.

Organisation Intersex International (OII) and other advocacy and support networks are a direct response to the pathologization of intersex and the medical “fixes” that accompany this practice. Traditionally opposition has been expressed both in regard to the purely cosmetic surgeries performed on so-called ambiguous genitalia and to the surgical “normalization” of unambiguous genitalia, such as the enlarged clitoris usually found with Congenital Adrenal Hyperplasia (CAH).

But other practices, all intended to reinforce the Adam and Eve sex binary and cultural gender norms have not been overlooked. For example testosterone administration to XXY (Klinefelter) syndrome individuals, regardless of their personal sense of maleness, femaleness, or anything else is a common medical practice and can also deprive the affected person of autonomy. In truth there is almost no aspect of intersex biology that has not been subjected to some kind of “fix” by medical “experts”.

The recent introduction of DSD terminology is reflective of medicine’s determination to impose a pathological perspective on virtually every aspect of intersex biology regardless of personal experience.

OII endeavours faithfully to reflect the views of its many thousands of members, with all their different languages and cultures. It does not attempt to impose the perspectives of just a few activists or administrators on its membership.

This paper falls down because it approaches the topic from a medical perspective. It then expects intersex advocacy and support networks to accept that perspective and approach their advocacy on that basis. OII does not accept intersex as a medical pathology, rejects out of hand all terminology that has the effect of doing so and can see no good medical reason for the vast majority of surgeries carried out on intersex genitalia.

That is the will of our membership, the people who have to live with many negative consequences of intersex medicalization and pathologization. Around the globe OII’s message is clear – if there are medical issues such as adrenal fluctuation in CAH patients, then doctors have a clear role to play.

Policing intersex social, cultural and sexual orientation is not the business of medicine. It is the private business of each individual. Surgically altering intersex genitalia solely for the purpose of controlling the future psychosocial experience of intersex babies is unacceptable. If these authors want intersex participation in their decision making they will need to start listening to those unwilling and disenfranchised adults who have been subjected to medicine’s historical experiments as babies and young children.

The approach adopted by this paper shows precious little signs of that happening. Predictably it is more a plea to support medical “care” teams and ongoing medicalization.

OII rejects such an approach.


International Journal of Pediatric Endocrinology
Volume 2010 (2010), Article ID 563640, 4 pages


Peter A. Lee and Christopher P. Houk


  • Department of Pediatrics, Penn State College of Medicine, The Milton S. Hershey Medical Center, P.O. Box 850, 500 University Drive, Hershey, PA 17033-0850, USA
  • Section of Pediatric Endocrinology, Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, IN 46202, USA
  • Department of Pediatrics, Medical College of Georgia, Augusta, GA 30912, USA


In the era of advocacy groups, it seems appropriate to contemplate how best to utilize them for patient benefit in the management of those with disorders of sex development (DSD), including those with congenital adrenal hyperplasia (CAH). Such interactions, to be constructive, require a spirit of cooperation to optimize outcomes. A traditional view of advocacy groups as a type of defender of patients’ rights appears outdated and it is time that the benefits of their participation be fully realized. Open dialogue with all patients/families, including those who feel harmed by prior care are paramount. We discuss several recent examples of interactions that illustrate how dialogue in the name of “advocacy” can have a negative impact on developing a framework for ongoing constructive dialogue and actions. Such approaches completely change the dynamics of subsequent interactions. Physicians involved in the care of individuals with DSD, including those with CAH, and patients should be aware of confrontational techniques and legal implications that may be used by some advocacy groups. Hopefully recent efforts to promote a multidisciplinary care approach for patients with DSD/CAH will continue to foster mutual cooperation between team members, where the common goal is improving patient/family outcomes and quality of life.

More information

Read the full article