Jonny Violette Skye Boys
In this article I will be critical of the medical establishment. It is not meant to discourage anyone in the clinical research or medical establishment, it is simply meant to ask you to be willing to rethink how you approach the assumptions of your predecessors.
My name is Jonny Violette Skye Boys; I am a non-binary (gender), intersex (biological sex) human. I am 39 years old.
I am Intersex, born with XXY chromosomes. What that means is my body naturally produces the testosterone level of an adult woman and high estrogen levels, I have very small testicles, a small penis and breasts. The American Academy of Pediatrics assumes the majority of 47XXY humans are male. As a result they treat us with testosterone as early as 8, no alternatives are given to parents, which ends up pigeonholing kids into a predetermined gender. I was raised as a boy, but I was different from a very young age. I was very artistically inclined; I was really into music and fashion. I was already 5’ 8” tall and had breasts and I was attracted to girls by the age of 10 and was first attracted to boys when I was 13.
I made it through high school and university and by 2000 I found my partner and we married. Right off the bat I noticed something incredible, when she had her period I would break out in acne and we would both suffer from hormonal issues like moodiness. After trying to have kids for three years I was tested to see if something was wrong. They did a semen analysis, it came back zero sperm, and so they did a genetic test. I was 30 years old, but I didn’t begin processing what being it meant to be intersex until 2012. In 2013 after being pressured by my wife I began seeing an endocrinologist. She put me on testosterone therapy, assuming my gender was male because I am married to a woman. I however do not identify as male or female. Ironically there have been no long-term studies on the effects of synthetic testosterone use in adult XXY patients. As a result of testosterone therapy I have to donate blood every 52 days because it makes my blood too thick. As is common for most Intersex people, we have to advocate for ourselves with our doctors. It is a daily battle to get good healthcare.
We live in a very strange time. A more socially liberal part of society is pushing to accept transgender humans and at the same socially conservative segments of western society are pushing against the recognition that intersex humans have rights to have bodies not defiled by hormone treatment or destroyed by genital mutilation. Although, the UN has decreed that genital mutilation surgeries on infants are akin to torture, as the infant has no say in the surgery and often times they are irreversible. Malta has passed laws holding doctors not only liable but putting them in prison for such surgical practices. Columbia’s high court ruled against genital surgeries on intersex infants. The Chilean Ministry of Health just declared that no doctor should perform such surgeries.
In the States, from the cases available to be counted, more than 1700 of these surgeries are happening every year. They are performed under the argument that the child will suffer immeasurable psychological damage and bullying from having abnormal genitalia. So doctors, cast science aside and go with their gut to create the genital set up they think will best match the gender of the infant. But as we now know gender occurs in the brain. So a doctor cannot select the correct genital assignment ever, until the patient is old enough to recognize what their gender is, then and only then giving consent to surgery.
Much of the current approach to invasive treatment of intersex people is based, unfortunately, off of the now defunct theories and practices of John Money. Money is most famous for the case of David Reimer, who suffered an extreme circumcision at birth, in which John Money advocated for the penis to be cut off and hormonal treatment to be used, for the parents to raise David as a girl. David’s parents acted on that advise. Money operating out of Johns Hopkins University created the Gender Identity Clinic in 1965 and used his assumed success in the case to build on and influence the entire medical community. Fortunately as we all know now, David as early as three, started identifying as a boy. David worked with Milton Diamond to discredit Money’s assumption that gender is learned and can be manipulated at birth by doctors. Today the younger medical establishment seems more willing to move away from this line of practice, for which the intersex community is very grateful. But there are enough old school doctors still influencing medicine that we are not out of the woods yet.
Those of us who are 47XXY humans have to advocate for our selves in our healthcare, because the establishment is still working off of assumptions and research on children, not adults.
I was diagnosed in 2006. When I found out I went directly to the National Institute of Health’s website to find out more information. Every year that information changes because more studies are being done on adolescents. To date all of the studies on adult XXY humans are old and they were of subjects in mental health facilities, most studies from the 60’s through the 80’s were of 5 to 6 subjects, which is not accurate at all, now that we know 1 in 600 humans are born 47XXY.
And this is where science seems to goes out the window. The American Academy of Pediatrics recommends that children aged 8-12 begin subdermal testosterone therapy so that they can be normalized as developing boys. The same treatment is given to adults. Now, university level education is beginning to suggest that no hormonal treatment is necessary. From my own research within XXY support groups of adults around the world our bodies naturally produce high estrogen levels, patients are now asking for their estrogen levels to be checked. My testosterone level when measured as a 37 year old was 100 ng/dL, which quite ironically is only slightly elevated from that of an adult XX female. Because the medical establishment has operated on assumptions that the Y chromosome makes us male, they do not order blood panels for estrogen levels in adult XXY patients. After bringing it up to my own endocrinologists late last year, they were open and honestly said, “oh that does make sense”. I will be going off of testosterone therapy this year to measure my naturally occurring estrogen levels. Then I will plan on supplementing my naturally occurring estrogen levels, for heart and bone health only.
Recently the University of Utah’s “Learn Genetics” webpage stated this about XXY humans: “Teens and adults who wish to be treated can be given hormones. The hormone testosterone will help them develop more typically male characteristics, and estrogen will help them develop more typically female characteristics.” So it is my hope that updated clinical science is moving in a more practical direction that is suggesting that doctors use caution when advocating for patients to use hormones unless they want to be normalized.
The genetics research that is occurring globally is turning much of society’s prior assumptions of female/male only on end. Nature.com released a great piece titled “Sex Redefined” in which it talked about how our society is ten years behind the genetic findings that there are not just two sexes. Many younger scientifically inclined minds in the intersex community are now themselves pursuing careers in bioethics and they are writing literature[10, 11] presenting their own evidence that counters the assumptions of the clinical medical community that is largely separated from the everyday lives of intersex humans.
To those of you working in research or medicine, please know that what you are doing affects real people. We are not lab rats. We are not statistics. We are humans, please treat us thusly.
This article was published in the March IHEYO Youth Speak newsletter, as is republished from Jonny’s personal blog.