I was born with a DSD. Is penoscrotal hypospadias with severe chordee an intersex condition? Am I intersexed?
Your questions are more difficult to answer than one would think. The term “intersex” has changed in meaning over time, more so among doctors than perhaps many who consider themselves to be intersex. From a medical point of view, your condition would not necessarily have been considered an intersex disorder in the past. However, an international consensus reclassified disorders with either abnormal sex chromosomes (ie XO, XXY) or atypical genitalia under the umbrella term “disorders of sex development” (DSD) in 2006. Given that hypospadias is a condition where development of male external genitalia is halted prematurely, this is indeed a DSD. The term “intersex” however is no longer considered to be a contemporary medical word and has been replaced by DSD.
Adults who consider themselves to be intersex generally have a history of ambiguous genitalia, may or may not have been subjected to “normalizing” genital surgeries in infancy and/or childhood, but do not feel that they fit neatly into the binary boxes of male or female. They usually feel that if surgery occurred that it was undesired and destructive. Their gender identity may be the same as their sex of rearing, opposite, a combination, or something else. Adults who identify as intersex are generally offended by the new medical nomenclature “DSD”; they do not feel that their sex is disordered but rather a natural occurrence within the human spectrum. They are also quick to point out that they are not transgender or transsexual and do not feel that they are a part of those communities. Unlike the trans communities, they feel that their gender identities match(ed) their bodies, though they may not match their surgically altered bodies nor the sex of rearing that was chosen for them. The intersex community is still rather small given the shame, embarrassment and mistreatment individuals were subjected to while growing up as well as the continued ignorance of society regarding their existence.
People that continue to be born with chromosome abnormalities and/or varying degrees of genital ambiguity may feel that they are either truly male or truly female with a DSD medical condition, not intersexed. On the other hand, if their gender identity is the opposite of their sex of rearing then they may consider themselves to be trans. Others feel more comfortable with an intersex identity. Thus the matter of what is considered an intersex condition and who considers themselves to be intersex remains quite murky.
There are intersex groups that exist online and occasionally meet in person. If you are interested in chatting with others like you I would recommend checking out Organisation Intersex International (OII). They are “devoted to systemic change to end the fear, shame, secrecy and stigma experienced by children and adults through the practice of non-consensual normalisation treatments for people born with atypical anatomy, and the arbitrary assignment of a particular gender without an informed consultation with the individual concerned.”
Hope this helps and good luck to you. Happy holidays!
James Pate, MD