Growing Up Intersex: Embracing Teens Who Are Different
As Double Exposure finds it’s way in the world, many readers have shared their own stories with me.
I am continually awed and inspired by their honesty, tenacity and courage.
What stands out most though is that despite the isolation, bullying, and for many of them multiple suicide attempts, these former teens have developed an amazing generosity of heart.
The following interview is with a woman I shall call Mary.
1. How did you learn about Double Exposure? and what made you want to read the book?
A dear friend made me aware of Double Exposure. She sent me a link to an article about the novel, and an interview with you, which piqued my interest when I learned it was about an intersex teen. On top of that, an intersex teen who lives in Wisconsin!
With the exception of the novels such as Middlesex and Last Weekend, there aren’t many novels depicting the experiences of individuals with intersex/DSD conditions.
2. What is the medical name of the condition you were born with? Does it run in families?
I was born with Androgen Insensitivity Syndrome (“AIS”). Yes, AIS does run in families and can affect many women in multiple generations.
3. Did you see yourself in the book?
Yes, I did. Alyx’s feelings of being an outsider, different, and not fitting in mirror my experiences when I was about 10 years old and was diagnosed with AIS. Alyx held a secret about herself that she was afraid would be discovered by her friends and fellow students, and it tore her up inside. I had the same experience.
4. What made the characters and their situations believable to you, and why?
The depiction of Alyx’s abuse at the hands of the aptly named “Prickman” and his cronies is sadly true to life. If a child is found out as being different, be it an intersex condition or other differences such as sexual orientation, bullying ensues. Alyx was lucky to have a loving mother, uncle and grandfather. But still, it was a very difficult situation for Alyx and I found myself rooting for her, and wondering how everything would be resolved for her in the end.
Also, like Alyx, many girls with AIS and individuals with other intersex conditions have counseling available to them, and physicians who are more informed in the proper care of intersex patients. Treatment methods have certainly evolved over the years, and Double Exposure seems to accurately reflect this.
5. You mentioned that you had a surgery when you were around 12 years old, what were told about that surgery by your parents and medical professionals?
I was about 10 years old when I was diagnosed with AIS, was told that it was hereditary, I couldn’t have children, and I would be on hormone replacement therapy. At that age, I didn’t really know what all of that meant. My Mom and Dad didn’t say much about the surgery and my doctor gave me absolutely no information about the details of my surgery. Even when I became of age, he didn’t elaborate on the surgery or provide any details. I am certain that the doctor informed my parents that discussing AIS (or Testicular Feminization as it was known back then) would be too traumatic for me.
Back then, in the mid-1970s, that was what doctors had in their playbook. Don’t say too much, especially if your daughter is young; she could become traumatized and even suicidal. Only when I discovered my medical records when I was much older did I learn that the surgery I had when I was 12 years old was called an orchiectomy and I had XY chromosomes. When I was diagnosed, I was told I had Testicular Feminization Syndrome, I learned the new term was Androgen Insensitivity Syndrome soon after I found my medical records. Thank heavens for Google! I was amazed at all I found after discovering my medical records and turning to the internet for answers.
The most important thing I found was an AIS support group. I have gained many friends who I consider sisters. Our shared experiences of secrecy and shame and struggling to break through and find peace with our AIS status have bonded us.
6. You experienced bullying as a young person, can you say more about why you were bullied and the impact that has had on your life?
When I had my surgery I confided in a friend, telling her I had a “family condition” and I can’t have children. My friend told others in my class and I was picked on when they learned that I couldn’t have children. Thankfully, they didn’t know any of the details about my condition, and as mentioned above, I didn’t know either. If they had known about my chromosome status and the details of my orchiectomy, I’m sure the bullying would have been much worse.
The bullying experience has made me distrust people at times, and deepened my feelings of shame and of being different. I also thought that I betrayed my family by confiding in my friend, and I had extreme guilt as a result. The situation in school got so bad that the principal and my Mom talked about transferring me to a different school. Luckily, when I entered High School, I didn’t really associate with my grade school classmates, and was able to make other friends which made me very happy.
7. What was the first thing you did when you realized that you were made “differently” than many of your friends?
I don’t recall doing anything specifically. At the point I was told that I couldn’t have children due to a family condition, and that I would have to take hormones for the rest of my life, I think I went numb. From that point on, I knew that I was different, and with no one in my family to guide me and provide support, I felt very isolated and alone.
8. As an adult, how do you feel now about the fact that you will never have children, unless you adopt?
I experience sadness from time to time. My nieces and nephews are starting families; my siblings are becoming grandparents. It saddens me that I won’t have that experience, but yet I’m happy for the new additions to the family. I think my husband and I would have been good parents, and we could have provided fantastic experiences for our children, but it just wasn’t meant to be. I take comfort in having fabulous nieces and nephews!
9. Anything else I missed that you would like to share about yourself or how you feel this book could be of interest to people, especially, young readers?
Young readers can get so much from reading Double Exposure, of the most beautiful aspects of life is the diversity it provides. Instead of tormenting those who are different than us, we should be embracing them and be thankful for their presence. Being a teen is so very difficult, and in a perfect world there would be no bullying and everyone would live in peace. But, that’s not the reality and I think that Double Exposure can teach an important lesson to young adults.
Also, it’s important that young adults are exposed to novels such as Double Exposure, so they can get an idea of what it’s like to be bullied, and hopefully work up the courage to stand up and help those that are bullied.