DSD But Intersex Too: Shifting Paradigms Without Abandoning Roots

by Sherri Groveman Morris, Esq.

The Intersex Society of North America (ISNA) and the Consortium on Disorders of Sex Development (“DSD Consortium”) have recommended that in venues where the medical care of infants is considered, the initialism “DSD” be used in favor of the term “intersex.” While both “DSD” and “intersex” are “umbrella” terms (meaning that they encompass people born with a variety of discrete conditions but having important features in common), the former has recently been adopted to aid in classifying conditions involving sex development. Prior to the adoption of “DSD” as the preferred term, there was apparently some confusion about whether certain medical conditions properly fell under the heading of “intersex.” ISNA’s avowed aim in preferring “DSD” is to support improved medical care for children born with such conditions. To that end members of ISNA have participated in the DSD Consortium, which has produced two publications entitled Clinical Guidelines For The Management of Disorders of Sex Development In Childhood and Handbook for Parents, both of which employ “DSD” nomenclature almost exclusively.

A large and diverse number of adults treated for these same conditions have spearheaded this movement for improved care. They are committed to an open, honest and productive dialog between the medical community on the one hand, and patients and their families on the other. However, many of these adults have adopted, and prefer to continue to identify with, the term “intersex” as a way of classifying their conditions and to speak about their bodies and their experiences. They find the word “intersex” empowering because it provides a sense of community and allows people with many different conditions to band together to work toward better medical care and social justice.

There is a splendid and powerful array of narrative and poetry, prose and biography, and websites and scholarly publications which reflect the many facets of what it is like for individuals to be born and raised, and now living, as intersex individuals. Many of these works have been incorporated into compelling anthologies which have resulted in a long overdue voice for the silenced, a point of entry into the experience for the non-intersex world, and a shift in the medical care of children born with such conditions. Some of these writings may seem frank, raw and perhaps even bitter, no doubt in part because in the past there was less appreciation by the medical community of the psychological needs of intersex patients. Regardless of whether “DSD” or “intersex” is used, these works remain relevant for the current generation of children and their parents who are confronting the challenging issues described in the Parents Handbook. They demonstrate how important patient-centered care is, what a critical role parents have in ensuring a better outcome for their children, and how despite the personal challenges that living with a DSD may present, love and acceptance and happiness are achievable goals for people born with DSDs.

In supporting a change in terminology within the medical community, ISNA must remain mindful that many of its prime constituents are adults who define themselves using the term “intersex.” It would be a mistake to advocate that “intersex” be replaced with “DSD” within such community, in the same way that people with a variety of different conditions identify themselves using terms which may vary from the terms employed by their health care providers. For example, instead of using a diagnosis such as “achondroplasia,” many individuals with such conditions have banded together using the term “Little People” because it reflects their history, culture, and real-life experience.

It is common for both advocacy groups and those who have historically been disenfranchised to undergo an evolution in thinking, which is often accompanied by changes in the name they prefer to use to identify themselves. It is important, however, that as ISNA looks forward it doesn’t abandon the term “intersex.” It is a term which gives meaning and purpose to, and reflects the courage and determination of, a community which has dedicated itself—often at considerable personal risk—to seeking improvements in care and widespread awareness and acceptance.

Sherri Groveman Morris is an attorney, intersex patient advocate, and former member of ISNA’s board of directors who has authored many book chapters and articles describing her experience as a woman with Androgen Insensitivity Syndrome, an intersex condition and DSD.

Note: You can read ISNA’s own discussion of this language issue here.