What Intersex/DSD means for me

As someone who is born Intersex/DSD, which for many of you, DSD is Disorders of Sexual Development that encompasses the older term Intersex. The old rules of what is intersex got thrown out in 2006 at a Chicago Intersex conference. Since 2006 Intersex and DSD mean the same thing and DSD encompasses earlier Intersex conditions and ones that were not formally called Intersex such as Kallmann’s syndrome and Klinefeltners Syndrome. Which is why as someone who has Kallmann’s syndrome, I am classified medically as having an Intersex/DSD medical condition. Prior to 2006, Kallmann’s syndrome would never be called Intersex, but after 2006, Kallmann’s syndrome is listed as having and Intersex condition and a Disorders of Sexual development.

In my case, I have the variation of Kallmann’s syndrome call the KAL-1 Gene. Because of the Mutation in the X linked DNA, I am born with a Micropenis, ambiguous genitals and the inability to smell anything. There are 7 variations of Kallmann’s syndrome, and because I have the KAL-1 mutation, I am classed more on the Intersex/DSD side. Which is why for me, I am medically diagnosed as an Intersex/DSD person. Even my Nurse Practitioner diagnoses me as being born with an Intersex/DSD medical condition, and it’s on all my medical records. That’s why medically I am treated as an Intersex/DSD person.

Why do I use the term “Intersex/DSD” ? It’s because I want to be encompassing of all older Intersex conditions and Newer intersex/DSD conditions. A lot of Intersex stakeholders couldn’t agree to the term DSD,and some wanted to keep the older term Intersex. So the compromise if that they call it “Intersex/DSD”.  So for me, I use the term Intersex/DSD to describe my Intersex/DSD condition and the older intersex conditions. A lot of groups from Accord Alliance to Advocates for Informed choice have used the term “Intersex/DSD” to included all those conditions within the DSD Guidelines.  Which is why for me, I use the term “Intersex/DSD” to describe and explain Intersex, DSD (Disorders of Sexual Development) and Kallmann’s syndrome. It’s slowly catching on, and people are slowly catching on to the DSD guidelines. The DSD Guidelines are available online at Accord Alliances website,and even the 2006 Chicago Consensus from the Pediatric Endocrine Society and the European Society for Pediatric Endocrinology is available for people and I will give the links below.

For myself as an Intersex/DSD person, I don’t see myself as normal Male or Female. Even though I am medically induced to look like a Male, I simply don’t see myself ever looking like a normal biological functioning male no matter how much medical science tries. I simply see myself as a Biological indeterminate gender because I medically and scientifically can’t fit in the normal biological male or female mold. Which is why I am looked at as an Incomplete man and incomplete woman. That’s on a physical, biological and genetic DNA Level. Physically because I have a micropenis and taller stature, it’s hard to tell if I look like a Normal biological man or woman. Most of my family tries to treat me as a man, but my friends just treat me as a human being.

It’s why as an Intersex/DSD person, I don’t see it as a Sex or Gender identity. I simply see Intersex/DSD as a Life long medical condition that you have to deal with for the rest of your life. Intersex/DSD is something that you have to deal with from birth and deal with it for the rest of your life. I don’t see Intersex/DSD as a sexual orientation because being born with an Intersex/DSD, there is nothing sexual about being born with a rare genetic Condition. So it’s why I never sexualize Intersex and DSD people, even though there are others from the queer community to the Trans community who sexualize and fetishize Intersex/DSD people. I only see Intersex/DSD as a medical problem and a medical condition that your born with.

It’s why as an Intersex/DSD person and someone with Kallmann’s syndrome, Intersex and DSD to me is nothing more than a Medical condition that I am born with, and I have to face and deal with for the rest of my life. I don’t and never see Intersex/DSD as a sex, gender or sexual orientation and see Intersex/DSD as a medical condition that you have face and deal with for the rest of myself. For myself, I have to face the prospect, that I am never going to be able to reproduce and never have normal sexual function and biological functions.


Accordalliance.org. 2006. Welcome to Accord Alliance. [online] Available at: http://www.accordalliance.org/ [Accessed: 30 Aug 2013].

Aiclegal.org. 2006. Advocates for Informed Choice | Preserving the civil rights of children born with variations of sex anatomy. [online] Available at: http://aiclegal.org/ [Accessed: 30 Aug 2013].

Ghr.nlm.nih.gov. 2008. Kallmann syndrome – Genetics Home Reference. [online] Available at: http://ghr.nlm.nih.gov/condition/kallmann-syndrome [Accessed: 30 Aug 2013].

Lees, L. 2013. DSD Guidelines. [online] Available at: http://www.accordalliance.org/dsd-guidelines.html [Accessed: 30 Aug 2013].

Pediatrics.aappublications.org. 2013. Consensus Statement on Management of Intersex Disorders. [online] Available at: http://pediatrics.aappublications.org/content/118/2/e488.full.pdf+html [Accessed: 30 Aug 2013].