Dear Medical Complex, Please stop saying Disorder of Sex Development.

 

If we are to change our culture’s view of intersex people, there is something very powerful we all can do.  It is as simple as changing the language used to describe intersex children and adults. The United Nations’ states: “Because our bodies are seen as different, intersex infants, children and adults are often stigmatized and subjected to multiple human rights violations.”  You can learn the right language by simply reading the United Nations Intersex Fact Sheet and taking the simple suggestions below.

As many know, there are no laws in the United States to protect innocent intersex children from medically unnecessary cosmetic genital corrective surgeries.  One of the biggest reasons parents are talked into surgery is due to their child being diagnosed with one of the many diagnoses of intersex and persuaded to do surgery to “fix” their child.

By medical experts, parents are led to believe that their precious newborn was born a psychosocial emergency, and that surgery is for the emotional well-being of the child.  However, thousands of unhappy adults who were forced into surgery as children prove their theories are absolutely wrong.  It is clear to me that the problem is not with our bodies, it is with society accepting our bodies as not shameful, and celebrating intersex bodily variations again.  In other words, it is what I like to call cultural dysphoria.

Most of these surgeries are not medically necessary and are only cosmetic in nature.   

Here is an alphabetical list of some of the diagnoses of intersex bodily, chromosomal, and hormonal variations:

• 17-beta-hydroxysteroid dehydrogenase deficiency
• 5-alpha reductase deficiency
• 46 XX testicular disorder
• 46 XX intersex
• Androgen Insensitivity Syndrome – AIS
• Ambiguous genitalia
• Aphallia
• Chimera
• Clitoromegaly or macroclitoris
• Congenital Adrenal Hyperplasia – CAH
• Cryptorchidism
• Endocrine-disrupting chemicals
• Gonadal dysgenesis, partial or complete
• Hermaphroditism not elsewhere classified
• Hormonal imbalances
• Hypospadias and Epispadias
• Iatrogenic
• Idiopathic
• Intersexuality with hormonal variations
• Kallmann syndrome
• Klinefelter Syndrome
• Late-Onset Adrenal Hyperplasia – LOAH
• Micropenis or Microphalus
• Mild Androgen Insensitivity Syndrome – MAIS
• Mosaicism involving sex chromosomes
• MRKH – Müllerian agenesis; vaginal agenesis; congenital absence of a vagina
• Not XX and not XY
• Ovotestis, formerly called “true hermaphroditism”
• Pseudo Hermaphrodite
• Partial Androgen Insensitivity Syndrome – PAIS
• Progestin-induced virilization
• Swyer syndrome
• Turner syndrome
• XXY

Help us end Cultural Dysphoria

Words and phrases to use:

1. Intersex Person
2. Intersex Bodily Variations
3. Intersex Traits
4. Intersex Hormonal Variations
5. No Body Is Shameful.

Please STOP saying:

1. Disorder of Sex Development (DSD)
2. Don’t consider an intersex bodily variation a congenital birth defect.
3. Leave off “Syndrome” when referring to those variations that use this word.
4. Stop assuming all children will want surgery when older, or that they will feel they are in the wrong body.  Some of us want surgery when older, and some of us do not find it necessary.

These Human Rights Organizations and many more say it is time to Stop Intersex Genital Mutilation (IGM).

I am Proudly the First in Colorado to get an Intersex Birth Certificate

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An anonymous note from a parent of an intersex little girl:

Disorder of Sex Development (DSD) is what most of the medical complex uses. In our home, we don’t use DSD. We prefer the terms ” Intersex or natural bodily variations.” The reason: I had a difficult time associating the word Disorder with my child. It’s much less branding for us to talk with her using our preferred words. In my mind disorder is a stigma driven word that has psychological effects on society. I sat down once and wrote all the words that come to my mind with that one word. I did a social poll asking others what came to mind when they say the word Disorder. The results were preconceived ideas of bad things, things that need to be fixed, broken, weird, and sad. The words that people associate don’t describe my child. I know that she is not a disorder and that her PAIS (Partial Androgen Insensitivity Syndrome) is the noun here but the general population will associate her as a disorder. These are my thoughts and when I talk with others I share our preferred terms. I’m working on getting the endocrinologist to at least try and understand the impact of DSD as a blanket descriptor.

I am Proudly the First in Colorado to get an Intersex Birth Certificate

How to Stop “Dis-ing” Intersex! By Jim Costich

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