I was born with complete androgen insensitivity syndrome, an intersex trait that wasn’t discovered until I was a teenager. I’m externally female, meaning I was born with a vagina, so my parents had no reason or way to know that I was intersex. I was a teenager when doctors discovered, because of an unrelated event, that I had XY chromosomes, internal testes, and a blind-ended vaginal pouch.
When doctors told my parents I was intersex, they also instructed them to withhold the diagnosis from me in order to protect the development of my gender identity. My parents went along with the doctor’s recommendation, and a few years after my diagnosis, when doctors determined my breasts were sufficiently developed and I was of a reasonable height for a woman, my testes were surgically removed. At the time of the surgery, I didn’t know that the surgeon was removing my testes, because I didn’t even know I had them.
Given my experience as an intersex person, activist, and sociologist who studies intersex, I offer below a list of five things I hope you do for your intersex child:
1. Be Honest and Open
Following the doctor’s orders, my parents never told me the truth about my diagnosis. I didn’t learn I was intersex until I was an adult and obtained my medical records. I know far too many intersex people who, like me, were lied to or never informed about their diagnosis. This is simply not acceptable, because when a child does find out about their diagnosis they will likely feel betrayed, angry, and deceived. They might also feel compelled to continue to hide the things they were told even after they find out the truth. After I discovered I was intersex, I didn’t initially feel comfortable sharing the diagnosis with anyone—not even my closest friends. I figured if my family lied to me, intersex must be so incredibly shameful that my secret should never be shared.
Instead, explain to your child that intersex is a natural and normal variation of the body. Your child should know that internal and external genitalia come in all shapes and sizes. Help your child understand that genitals do not prescribe gender. Just because someone has a vagina doesn’t mean she will be feminine or identify as a woman—sex and gender are complicated and different from each other.
2. Seek Out a Different Kind of Information
As I argue in my book, Contesting Intersex: The Dubious Diagnosis (2015, NYU Press), parents of intersex children do not need more medical information—they get enough of that from medical providers who problematically frame intersex as a medical emergency. I encourage you to seek out a different kind of information, the kind of information that comes from connecting with the intersex community, especially other parents and intersex adults. You can begin by checking out the AIS-DSD Support Group.
Please know that you are not navigating unfamiliar woods. Earlier generations of parents have paved the way for positive and supportive familial relationships by taking intersex adults’ advice seriously. I encourage you to follow these carved paths and work on improving them as needs change and vary for future generations of intersex people.
3. Respect Your Child’s Autonomy
While you are your child’s legal guardian, please respect your child’s autonomy and refrain from consenting to medically unnecessary and irreversible interventions—so-called “normalization surgeries” in which one’s genitals and internal anatomy are removed and/or modified in order to align one’s body with one’s assigned gender. Everyone—including children—deserves the right to make their own decisions about cosmetic surgeries, and that’s precisely what normalization surgeries are underneath all of the medical lies and deception. If an intersex adult chooses to have normalization surgery for any reason, that’s their decision and it should be respected. But until kids are mature enough to make their own autonomous health care decisions, you should not consent to medically unnecessary and irreversible interventions on behalf of your intersex child.
Please don’t worry that your child’s intersex trait will interfere with the formation of your child’s gender identity. As explained above, sex and gender are both social constructs that are not neatly correlated. The appearance of your child’s genitals will not affect their gender. Some intersex boys will grow up to follow traditional masculine expectations, and some won’t. The same is true for intersex girls. What you need to do is allow your child’s gender to evolve whatever way it does. Many children, regardless of intersex status, challenge gender binaries. There are boys who like more feminine things, girls who like more masculine things, and those who are gender fluid. These behaviors and preferences should be rewarded, for these kids are bravely challenging gender constraints.
4. Celebrate Different Family Forms
One of the biggest challenges many, although certainly not all, intersex people face is the inability to reproduce. This may be changing as medical technology advances, but even so, I encourage you to celebrate different family forms with your intersex child.
You can begin by letting your child know that, intersex or not, people have all sorts of families. Of course, some intersex people elect to partner with someone and get married and raise children, through adoption or otherwise, but others elect to live their life without raising children. Some people form family with close friends, while others look to four-legged friends for familial companionship. These are just a few examples of the many different family forms that exist.
Your child will, like all of us, be constantly bombarded with images of the traditional family—mom, dad, and biological kids—by TV shows, books, friends, teachers, and more. It is really important that you challenge these images by exposing your child to different family forms. Introduce your child to books that are inclusive of non-traditional family forms, gender identities, and the like. One of my favorite books is And Tango Makes Three—a story about two male penguins raising a penguin of their own. I asked my friends and colleagues for suggestions and they offered plenty, including The Paper Bag Princess, Morris Micklewhite and the Tangerine Dress, Call Me Tree, Is That for a Boy or a Girl?, Love Is the Hair, Are you a Boy or a Girl?, and None of the Above.
5. Listen to Your Child’s Needs
Intersex is only one aspect of your child’s life. It might be something that they need your help navigating, or it might be the least of their concerns. They might be bullied at school for something completely unrelated to their intersex trait, and need your help navigating that. They might struggle in math class. They might fall and sprain their ankle at soccer practice. Their needs will vary throughout their life, and might even vary across any given day. What’s important is that you are always listening to their needs and doing whatever it is you can do to assist, support, and love them throughout their lives.
All parents want their children to grow up living a happy and healthy life, and what I learned in my research is that parents of intersex children are no different. They do, however, worry that their child’s intersex trait will make their child’s life much more difficult. I imagine you feel similarly. Given that doctors often frame intersex as an emergency, coupled with parents’ concerns that their intersex child will not live a normal life, parents have historically consented to these “normalization surgeries,” oftentimes leading to trauma and hurt down the road.
But if you connect with intersex adults, you will learn that intersex does not have to interfere with one’s life. Plenty of intersex people are living happy and healthy lives in all sorts of careers and family forms.
Intersex is not the problem. What is a problem are the normalization procedures that harm intersex people. The scalpel cannot “fix” intersex kids, because intersex kids are not broken. If you ask earlier generations of parents of intersex children what they wish they had done when their children were younger, I believe you would learn that most parents wish they had not consented to medically unnecessary interventions. I encourage you to respect your child’s autonomy and allow them to decide for themselves if they want medically unnecessary and irreversible surgery. I’m confident your intersex child will return this support with love.
Georgiann Davis is assistant professor of sociology at the University of Nevada, Las Vegas. She has written numerous articles on intersex in various venues ranging from Ms. Magazine to the American Journal of Bioethics. In her book, Contesting Intersex: The Dubious Diagnosis (2015, NYU Press), Davis explores how intersex is defined, experienced, and contested in contemporary U.S. society. You can read more about her work at www.georgianndavis.com. Follow her on twitter @georgiann_davis
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