What are Disorders of Sex Development?
Those of you paying close attention to the ISNA site might have noticed the term “Disorders of Sex Development” (DSDs for short) being used interchangeably with “intersex.” In the future, ISNA will continue to use both of these terms—for good reason.
The word “intersex” has allowed many adults to speak about their bodies and their experiences. They’ve found the word “intersex” empowering because it provided a sense of community and allowed people with many different conditions to band together to work toward better medical care and social justice.
However, when working toward change, especially in medical venues, ISNA discovered that the term “intersex” sometimes made things more difficult. People were often confused, thinking that ISNA was speaking about “intersex” as an identity or that ISNA was focused only on gender issues involved. There were also problems with reaching agreement about what were and weren’t “intersex” conditions. For example, some people thought CAH counted as an intersex condition while others disagreed. These disagreements meant that the stakeholders were sometimes sidetracked into discussions about what counted as intersex conditions rather than how healthcare providers and parents could provide the best care and support.
Using DSDs instead has allowed ISNA to help focus those discussions on care and support. The term has already been adopted in the Clinical Handbook and Handbook for Parents that are being published by ISNA and in recent medical journal articles. We’ve found that the term DSDs is an incredibly useful umbrella term that allows everyone involved in the conversation to agree on the conditions that are covered and to focus their efforts on providing the best possible care for children and adults with these conditions.
We realize, of course, that any terminology including the word “disorder” can be construed as pejorative. We’d also like to emphasize that we use the abbreviated form of DSD whenever possible. Explaining why this is important, Alice Dreger writes, “we find that, when accompanied by an explanation of what we mean, DSD isn’t terribly stigmatizing. And an important point: the acronym DSD is very useful—and thus, the acronym should be favored over the spelled-out term— because as an abbreviation we don’t focus on ‘disorder’.” We explain what we mean, and then use the term “DSDs.” Thus, we recognize that this is not a perfect term, but we hope ISNA’s supporters and allies will understand that it’s helping us enact real change in medical care.
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