It’s kind of amazing how we might surprise ourselves by doing something we wouldn’t usually do right now. We are quarantined and stuck wherever we are stuck. We are navigating a worldwide pandemic with contradictory approaches. We are doing our best to keep our livestogether. As this drags on I find myself faced with more and more Covid-19 restrictions. I’m having to rethink my usual responses to situations and I’m really pissed. It has also given me a fresh opportunity to look at said responses.

During Covid-19 shelter in place I decided to do two things I don’t usually do. I read a memoir; AND I read a book written by someone I know. I don’t do these things because I don’t want to be put on the spot with an opinion, and I also get jealous of good writers. Neither reaction bodes well but I’m really glad I took the leap. What could be more appropriate for an intersex activist / MRKH Warrior than having to create my own normal and my own response to life around me? Unlike most people regrouping to deal with COVID-19, some of us get to say, “Been there. Living that!” “You think your life has been turned upside down? Have I got a story for you?” So I strayed from my comfort zone to 1) read a memoir and 2) read one by someone I know, like and respect. I was breaking two of my rules in one brave leap.

The memoir in question is XOXY by Kimberly Zieselman. I know Kimberly because we are both intersex activists with similar traits. I was born with MRKH and Kimberly has CAIS. We have many things in common, and the AIScommunity made it a lot easier for me to start the MRKH Organization in 1999 when there was none. But even the things we have in common aren’t strong enough to squelch the fear instilled in us by social expectations. And that fear comes from what we do not have in common. I don’t know, maybe it’s a pandemic response to isolation, but that makes me very sad.

I read the first few chapters and had to reach out to Kimberly. I think it was a relief reaction on my part, but I wanted to tell her that I was loving the book and that I wished I had written it. Boom, both my fears exposed and it felt good, appreciative and connected. But wait, this wasn’t my story. This was written by a woman with CAIS. 

And herein lies the rub. I’m reading this memoir by a woman with CIAS, who has more in common with the MRKH community than I do. It kind of blew me away. Here she is living this completely typical middle class suburban housewife life, heterosexual, married with 2 adopted kids and a professional degree. She was a cheerleader, for crying out loud, but that is when the bottom fell out of her typical life. All because of that pesky Y chromosome, and being born with balls, which she didn’t find out until much later.

It took me back to a time in the 70s when someone heard about my vaginoplasty and assumed that made me a “transsexual”. During a violent confrontation I found myself thinking, “But I’m not like that”. It was as though “that’ was someone so terribly wrong that no one would want to be ‘that’. During this most vulnerable moment I reached for anything that would make me different from ‘that’, so I could feel safe.

I was fascinated by this; by how typical Kimberly’s life is, and by how what she represents is so feared. Hers is a story of commonality. Her doctor’s visits could have been my doctors’ visits. I certainly shared the insecurities that surface when she had to unlearn all she thought she knew about herself. I personally feel much safer knowing that we have things in common with even more people. Being 1:2000 feels a lot less lonely to me than being 1:5000.  And yet, I’ve been in the MRKH community long enough to know how much it upsets people to think we could have anything in common with someone ‘like her’ or the intersex community. Trusting her as I do I had to explore this fascination and ask……

EL: I’m trying to understand how you went from HS Cheerleader / surburban housewife to Intersex representative at the UN. Can you share a little about what those steps looked like? In broad strokes.

KZ: I always wince a little at the “housewife” reference but understand the point being that up until about age 40 my life was fairly typical for a middle-class American female raised with fairly traditional values. I’ve always identified as female (although struggled at times to feel like a “real” woman due to my intersex body), appeared feminine and been heterosexual. In my mid to late twenties after completing college and then law school I married my husband of 27 years. For nearly a decade it was just us as I began my career in nonprofit law and policy, including Boston Children’s Hospital. In my mid-thirties we adopted twin daughters and I eventually took some time off to focus on motherhood and my career took a back seat. It was during that time that I discovered the truth about myself – that I had CAIS, born XY chromosomes and internal testes – not partially formed, pre-cancerous ovaries and uterus as I had been told early in my teens. After a couple years of finding information and support on line and meeting several others like myself, I was ready to put my education, professional experience and personal passion to use on behalf of the broader intersex community – especially children. After meeting interact (then called “Advocates for Informed Choice) founder Anne Tamar-Mattis at a conference, I began doing some volunteer fundraising and was later hired on full time, becoming Executive Director eighteen months later. The rest, as they say, is history.

EL: You refer to yourself as an “Intersex” woman. What does that mean to you?

KZ: I choose to refer to myself as an intersex woman because most of my life I identified as only female, and in the last dozen years since discovering the truth about my body, now also as intersex. “Intersex” refers to being born with physical sex characteristics (such as chromosomes, genitalia, reproductive organs or hormones) that don’t line up with what is typically considered either a male or female body. So, by definition, I am intersex. But I am also a woman. And so much more.

EL: I had to laugh about the part when Charlotte got her period and you were glad you weren’t home so your husband had to deal with it. When my partner was pregnant, I remember hoping for a boy so I could skip girl puberty. What has it been like living through puberty with them?

KZ: It was probably my greatest fear about adopting daughters! It underscored my own deep feelings of inadequacy of not only being a real woman, but of being a real mom! But it all worked out. My girls have known I was intersex since just before they entered puberty and today are quite proud of their mom (despite my inadequacies!)

EL: You mention something about being the only straight person in the room sometimes. Was it uncomfortable to be around such a diversity of queer people, or just a new experience for you?

KZ: Discovering I am intersex has opened up my world in many wonderful ways, making it much richer than ever before. I have become much more aware and accepting of differences and diversity in humans. Specifically becoming an intersex advocate and doing the work I do at interACT has exposed me to a wonderfully diverse array of people particularly folks who identify as part of the queer community. And while I don’t identify with any of the other letters in the rainbow acronym, and my life experience is different from many queer folks, it is the common experience of being discriminated against and harmed based on authentic differences (in my case, bodily difference) that provides a sense of empathy, compassion and community. It has been my experience to date that the vast majority of intersex people choosing become activists are also queer. Therefore, I often find myself in rooms (often virtual) where I am one of the only, if not the only straight person. At the beginning of my work over seven years ago this was a new experience that proved challenging at times but mostly highly rewarding. I am still learning and growing. It is also my hope that more non queer intersex women will feel comfortable publicly sharing their stories as well. Sometimes I fear the intersex experience is presumed to be only a queer experience. But that is far from the truth. Whether non queer women with differences in their sex characteristics choose to identify as “intersex” or not, they are still by definition in the same category and their voices need to be heard.

EL: Intersex seems to increasingly be included under the LGBTQ+ umbrella. Do you agree with that growing trend?

KZ: It’s been included outside of the United States for quite some time now and is increasingly being included here as well. Generally speaking I agree with the growing trend from the perspective of activism because hands down the rainbow community has been the first to step up as allies including funding. The fear of difference (and in some cases flat outhomophobia) that is driving medically unnecessary harmful medical intervention on unconsenting intersex children is very similar to the fear driving the various examples of hatred and discrimination against members of the queer community. It’s notable that I am saying this as a non queer person (some would even call me a “middle class housewife 😉 ) But I can also honestly share that Iam increasingly thinking about the large number of intersex people (by definition, despite how they may identify) who are not finding community or protection through advocacy because they don’t see themselves as part of the LGBTQ+ umbrella. Frankly, many whose personal narratives and experience in the world more closely mirror my own. I would genuinely like to figure out a way to collaborate more directly with these folks, including many in the MRKH community.

EL: What do you say to people who might fit under the Intersex umbrella but don’t identify themselves at Intersex.

KZ: I think about this alot, and haven’t really figured out what to say – but I’ll take a shot. First, I want to say I have no judgement and I can truly understand why some are not comfortable identifying as intersex.  Second, I want to say if you are comfortable identifying with the word and/or accepting that your body meets the  definition of intersex, then it does not mean you have to consider yourself a part of the LGBTQ+ umbrella.  Third, I believe intersex is a broad umbrella term itself, and that there is room for many different believes and experiences despite how it might seem sometimes. Personally, when I think of the term “intersex” I focus on the shared experience of being born with sex traits that are a bit different from the binary and how that impacts us in the world (both positively and negatively).  I don’t think of it as a gender and certainly not as a sexual orientation.  I humbly suggest you don’t have to think of that way either. 

EL: How do you think having CAIS has shaped your relationships with family? friends?

KZ: For many years the realities of being born with CAIS has caused me to feel inauthentic. For example, not a “real” woman or mother because of my bodily differences and inability to get pregnant. I think at some level this made me feel distant and put some walls up particularly in my female friendships. It has definitely impacted my relationship with my parents. Did they know the truth but conceal it from me? Those are issues I have mostly worked through, but yes being born intersex has shaped my relationships in one way or another. This was particularly true before discovering the label of “CAIS” and understanding all that it means. After learning the truth about my body and previous medical intervention, I have generally felt much more authentic and confident which I think has translated into better relationships in my life. The truth in many ways set me free.

EL: I know what can happen to people who believe so deeply in their work. Sometimes you never turn it off because you’re living it. Was there a sign that told you it was time to pull back? And IF SO, what was it?

KZ: Well, as I write this, I am about to embark on a three-month sabbatical from intersex work. As I allude to in my book, there have been times when the impact of doing this emotionally heavy labor has taken a toll. And I am not alone, many intersex advocates have experienced substantial burn out and emotional fatigue. It’s a real problem in our community.  Most of us are operating from a place of past trauma to begin with.  I am fortunate to be able to take a break now and hopefully come back refreshed and recharged – but also with a new perspective on finding more balance.

EL: Your work includes advocating in the courts and legislatures for new laws and policies to change the current medical practices by physicians who treat intersex children. Why have you and interACT taken this arguably more adversarial approach?

KZ: Despite having a law degree, by nature, I am not a confrontational person. When I started doing this work, I was hopeful that increased awareness, communication and collaboration would change harmful medical practice. I have always been the “good girl” doing what my parents and doctors asked. But I am afraid that the well-meaning, collaborative educational approach has not delivered much change after more than a couple of decades (predating my involvement). So, interACT has turned to other tactics such as legislation and lawsuits, while also ramping up our awareness raising efforts and engaging in collaborative education opportunities when possible. It has taken me out of my comfort zone, but my own experience over the last few years has proven it to be necessary. I welcome the day when a more collaborative approach can serve to benefit the intersex community, especially vulnerable intersex babies and children.

Thanks Kimberly, for sharing yourself so openly. As someone who knows the toll that such intimate activism can take on us I know how hard that can be. Since diagnosis and treatment for MRKH and CAIS/PAIS/AIS are so similar and usually happen during such vulnerable times in our lives I value what we have in common. Ignorance and arrogance are making a huge impact on the health and well-being of the entire world right now. I am becoming more and more aware of what I have in common with others and relish what I have learned from silenced voices that are living out loud.

Esther Leidolf