Documentary Review–Gender Revolution: A Journey with Katie Couric

This past February National Geographic broadcasted a documentary on transgender identities entitled Gender Revolution with Katie Couric acting as a kind of guide. Intended for a wider audience the documentary covers the basics of sex, gender, gender identity, gender expression, sexuality. Nonbinary and intersex issues also receive some air time, but the main focus remains on binary transgender people, theories on why they exist, and how “this whole transgender thing” is having a moment. While any positive transgender representation on television is certainly welcome, the documentary does oversimplify and essentialize gender. As a result the documentary falls short in its representations of the intersex community.

First the documentary could do a better of making the distinction between intersex and transgender. While there is some overlap between the intersex and transgender communities (of which I am an example), the majority of intersex people do not identity as trans and the majority of trans people are not intersex. Also the two communities face different, albeit interconnected,  issues. For example, transgender people are seeking their rights to bodily autonomy by means of access to often necessary hormonal and surgical treatments while intersex people are seeking their rights to bodily autonomy by means of ending nonconsensual, medically unnecessary surgeries on intersex infants and children. It is important these differences be acknowledged when intersex and trans issues are covered together. Gender Revolution does not adequately present these distinctions. This is mainly due to the fact that their main focus is on transgender and not on intersex issues.

Second are the interviews covering intersex narratives. These include interviews with the parents of a toddler who was diagnosed with androgenic hyperplasia at birth and an interview with an intersex trans man on his traumatic experience with early surgeries. For the most part these stories are handled well. The accompanying statistics and discussion of the failed “John/Joan case” help to further enlighten the audience on the issues intersex people face on a wider scale. Yet the coverage takes a problematic turn with the inclusion of a doctor who justifies his recommendation for medically unnecessary surgeries on intersex children, saying he would opt for surgery if the child was his and the number of people who have issues after such gender assignments are small anyway. Such statements go completely against the lived experiences of intersex people. Regardless of gender identity most intersex people who undergo nonconsensual, medically unnecessary surgeries in childhood suffer trauma as a result and have to deal with the life long physical consequences often in the forms of decreased sexual function, increased injections, and sterilization. In fact entire civil rights movements have been organized against the practice and are continuing to do so to this day. Seriously including a doctor who justifies nonconsensual surgeries on intersex infants and children in a documentary covering these issues is problematic at best even it can serve as an example of how many medical professionals have continued these contested practices into the present.

Now there are some things Gender Revolution does well. It manages to make the basics of trans issues from generation gaps within trans communities to transgender health care accessible for those who otherwise would never have learned about them. In this way the documentary does well as an educational tool, especially for the cis majority. Even with it’s problems I would still recommend it to those who are in the early stages of learning about what it means to be transgender means as it manages to impart the basics in a gentle and accessible manner through the familiar styles of Katie Couric. However it should be viewed critically and with caution, especially when it comes to the segments on intersexuality.

 

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Introductions to Intersex Traits: What is Turner Syndrome?

This is the first in a series of posts in which I cover the basics of a particular intersex trait. For the purposes of this blog an intersex trait is defined as a bodily characteristic or set of bodily characteristics that have been determined to not be standard for male or female. This determination can be primarily chromosomal, hormonal, gonadal, and/or genital. Some examples include Androgen Insensitivity Syndrome, Congenital Androgen Hyperplasia, and cliormegaly. To begin I will focus on my own intersex trait, Turner syndrome.

Turner syndrome is a genetic intersex trait that affects approximately one in 2,000-2,5000 live female assigned births and most commonly manifests in a 45X karyotype instead of a typical 46XX karyotype or a typical 46XY karyotype. Other ways Turner syndrome can present itself include a partial absence of the second X chromosome, a partial absence in some cells and a complete absence in others, two X chromosomes in some cells and only one in others, and a 46XY/45X karyotype.

The vast majority of people born with Turner syndrome do not show any visible signs of having an intersex trait at birth, but this may not be the case for everyone. The most common symptoms of Turner syndrome are short stature and infertility due to lack of ovarian development. Beyond that Turner syndrome has such a wide range of possible manifestations any individual diagnosed with the condition will have only a handful of symptoms and no two individuals are the same. In other words, while the following descriptions of health issues associated with Turner syndrome may seem severe and intimidating it must be kept in mind this condition varies widely in severity from those who experience some of the more serious health issues mentioned here to those who experience so few symptoms they go through much of their lives undiagnosed.

While it is true most intersex traits do not present serious medical concerns in and of themselves, Turner syndrome is an example of an intersex trait that does present some potentially serious concerns. However these concerns at their core are not about gender/sex ambiguity per say and are actually about the health of organ systems that can be impacted when the second X chromosome is absent or partially absent. Before birth a prenatal ultrasound of a baby with Turner syndrome may show large fluid collection at the back of the neck or other abnormal fluid collections as well as heart and kidney abnormalities. At birth some with Turner syndrome may have certain physical features. These features include: wide or web-like neck, receding or small lower jaw, high, narrow roof of the mouth, low-set ears, low hair at the back of the neck, broad chest with widely spaced nipples, short finger and toes, arms that turn outward at the elbows, fingernails and toenails are narrow and turned upward, swelling of the hands and feet, short stature, and delayed growth.

Other potential symptoms of Turner syndrome that can present early in a person’s life include frequent ear infections, hearing loss, underactive thyroid, celiac disease, learning difficulties particularly in math and spacial reasoning, and a delay in growth. The most common diagnosis of these learning difficulties is nonverbal learning disorder. These issues are typically addressed with growth hormone replacement therapy, daily medications, medical monitoring, and appropriate accommodations in school if necessary along with care to address heart and kidney issues a person may be experiencing.

During adolescence the most common sign of Turner syndrome is a an absence of spontaneous puberty due to a lack of ovarian development, although there are some expections. In most cases this is addressed with estrogen/progesterone replacement therapy. With this treatment most go on to develop culturally feminine embodiments alongside their peers and the majority do feel comfortable living as women. However this is not the case for all of us.

Adults with Turner syndrome are more likely to encounter issues with osteoporosis and infertility. The former is addressed with continued hormone replacement therapy and the latter can be addressed through reproductive technologies or adoption for those who wish to have children. Issues with various organ systems beyond the aforementioned congenital heart and kidneys abnormalities can also arise. This makes continued appointments with an adult endocrinologist crucial.

Once again it is important to stress Turner syndrome has quite a wide range when it comes to symptoms and no individual will have all of the aforementioned symptoms and no two individuals are the same. For example, I showed none of the major signs of Turner syndrome at birth and was not diagnosed until the age twelve. Others possess visible signs of Turner syndrome from the beginning and as a consequence were diagnosed as infants. I was diagnosed only after it was clear I was leveling off on the growth early and was showing no signs of spontaneous puberty. Others do begin puberty spontaneously and are diagnosed as adults after other health issues point to Turner syndrome. Then there are also those who experience so few symptoms they go undiagnosed for the majority or even all of their lives. These are just a few examples of the wide range of ways Turner syndrome can affect different individuals.

Beyond the long list of potential physical symptoms it is also important to acknowledge diversity within the Turners community. We can be found in  all classes, races, ethnicities, cultures, regions, and just about every other social category one can imagine. This includes intellectual ability. Most of us have average to above intelligence and go on to have conventionally successful careers. We are your professors, school teachers, lawyers, doctors, nurses, day care providers, and much more. However it is also important to acknowledge some of us do not fit these conventional ideas of intelligence and success and there is nothing wrong with that either. No one should have to fit into society’s narrow vision of intelligence and success in order to live a meaningful life and be valued.

Finally, it is also important to recognize we come in all genders, gender expressions, and sexualities. While it is true most in the Turners community identify and present themselves as straight women, it is imperative gender and sexual diversity within the Turners community be acknowledged in medical care, media, and especially in support groups in order to ensure everyone receives the support they need regardless of gender identity, gender expression, and sexuality. In the end the best thing friends, family, and medical professionals can do for someone diagnosed with Turner syndrome is honor who they are absent chromosome and all and remember its about people, not chromosomes, hormones, or secondary sex characteristics.

Sources and Further Reading

  1. http://www.isna.org/faq/conditions/turner
  2. http://www.turnersyndrome.org/copy-of-about
  3. http://www.mayoclinic.org/diseases-conditions/turner-syndrome/basics/symptoms/con-20032572
  4. https://rarediseases.org/rare-diseases/turner-syndrome/
  5. https://www.turnersyndromefoundation.org/aboutts.html
  6. http://www.huffingtonpost.com/kelseigh-ingram/how-not-to-represent-turner-syndrome-in-media_b_7201490.html

Being Nonbinary and Intersex: My Identity at the Intersections of Sex and Gender

Recently I decided to write this post on my own identity at the intersections of sex and gender in an effort to improve intersex representation in any small way I can. Looking back on my journey so far I can’t help but think of how my life might have been different if I had been exposed to more diverse representations of intersex experiences with gender from the beginning. In writing about my own gender identity and how it intersects with my intersexuality I hope to help others in my intersex and nonbinary communities who are wrestling with similar questions concerning their own identities. Before delving into the details let me be clear this post is only a snap shot of my gender identity as it exists today. Anything I write here can change and that’s okay. Everyone has the right to experiment and to change their mind multiple times in the process. Going forward I reserve the right to be complex. Also I do not speak for all intersex people. Each person is different and I can only speak to my own personal experiences. Now with that out of the way let’s begin.

Some of the words I like to use for my gender identity include gender fluid, nonbinary, genderqueer, demiwoman, woman, and questioning. Sometimes I’ll even combine some of these words and describe myself as a nonbinary woman or genderqueer woman to indicate while I do sometimes identify as a woman I, as a gender fluid person, do not identify exclusively as a woman. What all of this means is my gender changes. Sometimes I experience these states one at a time and other times I experience some or all of them simultaneously. This can be pretty confusing, especially for those who are not familiar with nonbinary experiences. Even I will be the first to admit I’m still sorting it out, but I will do my best.

Some days I feel strongly as a woman and enjoy being seen as such. Yet there are also days when I feel somewhat or partially a woman (demiwoman), feel some frustration with being seen exclusively as a woman, and wonder if being called a woman, female, or a she really tells the whole story of my gender identity. I like to think of these experiences in terms of colors. For example, let’s say deep red represents the gender woman. That would make being a demiwoman a lighter shade of red or pink. Under this analogy it can be said these aspects of my gender identity range from deep red to pink.

Then there are also days when I like to describe myself as genderqueer. During these times I feel the gender binary does not adequately describe my gender identity and my gender actually exists outside of and beyond male and female. I use the term genderqueer to describe these aspects of my identity because I really like the political connotations and the broadness of genderqueer as an identity term offers when used to communicate an identity that queers gender by virtue of its existence outside of and/or beyond the gender binary.

Along with genderqueer I also like using the term nonbinary. This is mostly because it is more widely known than words like genderqueer and it also conveys a wide range of meanings. To be more specific I use the term nonbinary to describe those aspects of my gender identity that are neither of the binary genders or exist somewhere in between them, but always tilting toward the woman side. Plus there are times when my gender is confusing and difficult to define and for now nonbinary seems to be the best way to describe it. A few more specific terms I am currently exploring include gender neutral, neutrois, aporagender, multigender, and poly-genderflux, but these topics are for another post. Sufficed it to say I have a lot more questions and exploring ahead of me.

This fuller understanding of my gender identity has come after a long road of soul searching, questioning, and self reflection that will likely continue for the rest of my life. So far since coming out to myself as a gender fluid, genderqueer, nonbinary, intersex, Turners (demi)woman I have found my intersexuality does intersect with my gender identity in important ways and even overlaps with my gender identity. This is because I live in a cultural context in which sex is socially constructed as a gendered category and plays important roles in how gender is socially embodied. In this way being intersex has a significant affect on my gender identity and has come to play an indispensable role in how I understand, experience, and embody gender as an individual on an identity level and at a larger societal level.

How do you understand your gender? How did you come to that understanding? How do others perceive your gender? How do you feel about that perception? What words do you use to express and communicate your identity? Why have you chosen those words in particular? How does your gender intersect with other identities you hold?

 

Book Review–The ABCs of LGBT+ by Ash Hardell (Ashley Mardell)

Ever wished there was an accessible, go-to source of information with colorful illustrations you could use to explain your lesser known identity when coming out to family and friends? Ever wished there was a comprehensive source of basic LGBT+ terms you can turn to for learning about the new identities you’re hearing come up more and more frequently? Maybe a friend or family member just came out as an identity you’ve never heard of and you want to learn more about it in an effort to better support them. Well now there’s a source for that: The ABCs of LGBT+ by Ash Hardell (aka Ashley Mardell), a Youtuber who’s channel focuses on LGBT+ issues and education.

With the input of knowledgeable editors from various LGBT+ organizations and LGBT+ bloggers, this helpful guide covers a range of topics from spectrums to gender identities to romantic and sexual identities. This includes an entire introduction to sex/gender with an entire section devoted to intersex complete with direct input from an intersex person and spectrums to help illustrate the sex diversity of humanity beyond male and female. The fact intersex is given its own section entirely separate from the chapter on gender identities helps to address the common confusion between intersex and nonbinary identities. Such confusion is understandable given the common cultural tendency to think of gender exclusively through the lens of biological essentialism. However, the fact of the matter is gender and sex are separate, socially constructed categories and an intersex person’s biology as such does not dictate their gender identity. We can identify as any gender along the spectrum and beyond or even have no gender at all. Many of us identify as men and women in agreement with our birth assigned genders. Some of us contested our assigned genders and identify as transgender men and women or some form of nonbinary. As so many feminists have put it, “Biology is NOT destiny.” In this sense intersex is not a gender identity in the same way nonbinary, transgender, and cisgender are all gender identities. Rather intersex as an identity is based on biological sex in a social world instead of psychosocial gender.

Beyond the information on intersex the text contains a wealth of information on lesser known gender identities such as genderflux, maverique, pangender, and demigender complete with input from individuals who actually identify with these terms. There are very few texts that show case such an expansive, informative, and well researched list of gender identities all in one place and to make it even better the section on romantic and sexual identities is just as expansive and informative. Not only does it include lesser known identities like androsexual, omnisexual, and polysexual, there is also a high level of quality ace/aro representation throughout the chapter. Ace and aro are slang terms for asexual and aromantic, words that refer to those who experience little to no sexual and romantic attraction respectively. Often these identities are lost in the plus of LGBT+ even within gay, lesbian, bisexual, and transgender spaces. That is why the inclusion of these identities in books like The ABCs of LGBT+ is so important.

Now, to be fair, readers who are familiar with the more radical works of queer theorists like Michel Foucault, Judith Butler, and Dean Spade may find The ABCs of LGBT+ to be too basic and lacking in depth. However, as the title suggests, the text is intended to cover a wide range of basic information for a wide audience. In this way what the text lacks in depth it makes up for in breadth. Plus thanks to the efforts of Hardell and their contributors many readers who otherwise would never have heard of identities like demisexual, homoromantic, androgyne, and neutrois are now familiar with these often ignored identities and maybe have some new terms to help explain their own experiences. I know it has proven helpful in my own gender questioning and achieving my goal of becoming more knowledgeable on gender, sexual, and romantic identities beyond all of the binaries.

In the end as an activist, advocate, educator, and member of the queer community I would recommend this book as a guide to those who are questioning their identity as well as to those who wish to start educating themselves on LGBT+ topics and become better allies in the process. While the text only scratches the surface of LGBT+ identities, let alone queer politics, The ABCs of LGBT+ is effective in achieving its goals when it comes to educating readers on the basics of sex/gender, gender expression, sexuality, romantic attraction, and LGBT+ identities.

Book Review–Contesting Intersex: The Dubious Diagnosis by Georgiann Davis

Georgiann Davis’ Contesting Intersex: The Dubious Diagnosis is a compelling sociological assessment of the intersex rights movement in the United States and is an excellent read for anyone who wants to learn more about the current state of intersex activism. Using insights from the sociology of diagnosis, interviews with various stakeholders in intersex health care, and the work of major intersex organizations Davis effectively argues the medical profession introduced Disorders of Sex Development (DSD) nomenclature in order to reassert their jurisdiction over the intersex body after activists had successfully challenged their authority.

In her examination of the strategies currently employed within major intersex organizations such as Accord Alliance and the AIS-DSD Support Group Davis finds today’s intersex activists tend to take on strategies of contested collaboration with medical professionals rather than collectively confront medical authority like they have in the past. As part of this shift many organizations focused on intersex activism have adopted DSD nomenclature over the last decade in spite of how it inevitably pathologizes intersex bodies. While these less confrontational strategies have been useful for opening up conversations between intersex activists and the medical professionals who wish to care for them as well as for increasing access to biological citizenship for certain intersex people, there is always the danger that working with medical professionals may turn into working for medical professionals. Meanwhile intersex infants and children are still subjected to medically unnecessary surgeries with lifelong consequences despite formal changes on paper strongly advising against such “treatments.” Only now medical professionals can justify these practices in reframing their actions as part of treating abnormalities under the umbrella term Disorders of Sex Development. These findings act as a warning to activists that while collaborative strategies such as the use of DSD nomenclature may get us in the room and help some of us gain access to biological citizenship they can easily be co-opted, used to strengthen medical jurisdiction over intersex bodies , and create divisions within the community. To avoid these pitfalls Davis recommends cautious flexibility when it comes to terminology choices and collaborating with medical professionals and argues for strategic combinations of confrontational and collaborative strategies when seeking to transform intersex medical care.

Along with this analysis Davis also offers her own perspective as an intersex person diagnosed with Androgen Insensitivity Syndrome. Throughout her analysis Davis shares aspects of her own experiences with intersexuality and how her personal experiences with the topic affect her work as a sociologist. This makes Contesting Intersex a very personal work as well as an academic one. Such a personal touch is excellent for readers of similar intersex experiences.

Then there is the analysis of the various views and linguistic strategies of intersex people. Over the course of the research process Davis interviews members of various intersex organizations on their views concerning terminology. These views ranged from those who take on the new DSD nomenclature to those who embrace an intersex identity to those who are flexible in their language choices. Together these interviews yield important insights into the wider debate over terminology within the community at a macro-level as well as how individuals approach language on a micro-level. This includes the benefits and drawbacks of each position for individuals and communities, especially when interacting with families and medical professionals. The one limitation of these interviews is the participants are predominately white, upper to middle class, college educated adults with access to support group memberships, conferences, medical services, and the internet. Hence the issues intersex people who do share in these privileges are left out. However, even with these limitations, this portion of Davis’s investigation does generate questions for further research and offers important insights into intersex issues and community at this point in history.

Beyond the intersex community other stakeholders in intersex health care may find Contesting Intersex valuable for expanding their knowledge of the community and what it means to be intersex. This includes parents and medical professionals brave enough to listen. For this reason I would recommend Contesting Intersex  to those who are intersex  as well as those who love them and wish to care for them.

My Life on the Edges: A Story of Gender Complexity, Fluidity, and Expression

I am a neurodivergent, queer, bisexual, gender fluid, nonbinary, genderqueer, intersex (demi)woman diagnosed with Turner syndrome. This is the story of my life on the edges so far.

When I was born a doctor declared, “Its a girl!” To everyone present this seemed like a perfectly reasonable assertion. By all accounts my little body appeared to be what is considered typical for a baby girl and there were no other official options. Before I could even say anything for myself the word “female” was plastered permanently on my birth certificate, my parents gave me a culturally feminine name, and brought me home where a green room with all the essentials for a newborn were waiting for me. I was a very small baby, but healthy. Everything was going “normally” for this new Upper-Midwestern, middle-class, straight, suburban family.

As a child I gravitated toward stuffed animals, drawing, looking for doggies in the neighborhood, and assuming myself and my younger brother with elaborate games of pretend. I was the kind of kid who would pick up the Candy Land game and pretend it was a storybook rather than play the game itself. My favorite movies included Mary Poppins, The Lion King, and anything with a dog in it. A complete sense of gender had yet to take form and I didn’t really question my girlhood. At least I don’t remember doing so. I must have been too busy pretending, learning, and pestering Mommy (who is allergic to practically anything with fur) for a dog to be too concerned. Although I do remember being very vocal whenever someone told me I couldn’t do something like go shirtless, wear a suit, pretend to be a boy, or sing “the man song” from Mulan or suggested I had to do something such as like pink or play with dolls because I was a girl. I was going to play how I wanted and that was that as far as I was concerned. Looking back, I remember being a happy child who loved pretending and couldn’t do anything but be unapologetically herself. This continued even as I entered the wider world of school.

Once I started preschool it didn’t take long for the adults in my life to notice I still wasn’t learning how to recite my letters or count. As a five-year-old I was having too much fun playing and enjoying the family’s new, hypoallergenic puppy to be worried about any of this so my parents worried for me. It got to the point where my mother was concerned enough to bring me into the pediatrician’s office. There I chatted up the doctor using a larger vocabulary than expected of a small child, which left the doctor asking my mother why we were there in the first place. She then explained I still didn’t know my letters or numbers and expressed her concern that I might have a learning disability. While the doctor was surprised he assured her that I was still young, it was too early to tell if there was anything “wrong,” and I would learn eventually. This reaction reveals prevalent assumptions concerning what learning disabilities look and sound like that would come to dog me going into my formal education.

Since the general population tends to associate learning disabilities with visibly below average verbal skills and intelligence it took some time for my disability to be formally recognized as my above average verbal skills were problematically taken as signs of intelligence and therefore the absence of a learning disability. At first my teachers, while still expressing concern for my learning difficulties, had the same reaction as the pediatrician, “She’s still young. It’s too early to know if she has a learning disability. She’ll learn.” Fortunately I had parents who were excellent advocates for me and ensured I received the attention and resources I needed throughout elementary school. For a long time it was believed I had dyslexia given my tendency to write letters and numbers backwards, but I was not officially given any kind of diagnosis until much later. In the meantime, with the help of parents, teachers, special ed paras, and individual education plan caseworkers, I learned to read and write and even thrived academically with certain accommodations. By the time I was in fourth grade one of my teachers discovered I had a knack for creative writing. This positive feedback opened up a whole new world of communication for me and I started to write down the stories I had been either pretending or drawing all of my life. I even started to dream of becoming a writer like the authors of the books my mother read to me and my brother every night. The Harry Potter books in particular were abundant sources of inspiration as well as motivation to continue reading.

Along with new academic skills I also gained a fuller understanding of gender in elementary school. I grew my hair out down to my waist, started playing with the doll house my grandmother made for me in addition to my other toys, and would describe myself as a girl without hesitation. Still in terms of my gender expression I wasn’t the sort of child people called a “girly girl,” but I also wasn’t the kind of child people described as a “tomboy” either. I just lived my life as a girl somewhere in between those two labels and for the most part I was fine with doing so. At least I don’t remember my gender assignment causing me any distress or confusion in those days. At school and at home I was treated as a girl and told to expect growth spurts, breast growth, and menstruation in the coming years and had no reason to question what I was being told. It seemed to be just the way things were and I knew of nothing else. With no knowledge of options beyond the sex/gender binary I was fine with being a girl and expected I would develop into a woman in the same way as the other girls. I thought everything would go on like that forever. Then the transition to middle school approached.

Middle school came with a lot of changes in school, teachers, grading methods, routine, and classmates. All the other kids around me were suddenly growing very quickly and some of them were even showing visible signs of starting puberty. I, however, was still very short and relatively the same. At first this fact didn’t concern me or anyone around me much. My parents aren’t tall and everyone including me was under the impression my breasts were beginning to develop. Once again everything seemed to be going “normally.” For better or worse that wouldn’t last.

The signs anything other than average was happening became obvious at my twelve-year doctor’s appointment. The pediatrician’s face fell while examining where I fell on the growth chart compared to the year before. He then said he wanted to measure me again, which only confirmed what he had seen. I was already leveling off on the growth chart. This warranted a referral to a pediatric endocrinologist and a series of blood tests. A few months later a blood test revealed I had Turner syndrome, a genetic condition which in my case manifested in a 45X karyotype, nonfunctional ovaries, and a lack of spontaneous visible puberty. What we thought was breast development turned out to be only baby fat. In response to my body failing to reach expectations I was put on growth hormone injections in the hopes of reaching a height of five feet with plans to start estrogen and progesterone therapy after a few years.

Middle school was a particularly awkward time for me. My peers were changing and I was remaining more or less the same. I was never bullied, but over time I started to feel isolated and betrayed by the fact that everything adults had told me to expect as an adolescent wasn’t happening for me and I would never have the life they told me I would lead. I started to question everything I had been taught about gender and my place within it. I even felt different in some inexplicable way from the Turners girls and women I met at the support group meetings held at the clinic, which made me feel even more alone and confused. I was adrift without any references or language for what I was going through.

Then to make matters even worse my individual education plan was revoked when I was in the eighth grade because I was receiving good grades. As far as the administration was concerned my academic success meant I no longer needed accommodations. I, on the other hand, knew my academic success was an indication the accommodations I was receiving were effective and I still needed them. Even then on some level I knew I was being punished for being on the edge of what society constructs as disabled subjects who are deserving and in need of accommodation and which are not. Fortunately my parents and teachers agreed with me and took steps to ensure I received the help I needed for the rest of my time in middle school and going into high school. My parents were shortly after these events made aware of the option to receive accommodations through a 504 (a provision of the Americans with Disabilities Act), which meant I needed an official diagnosis.

Fortunately, it didn’t take long to receive a diagnosis. After a few hours of tests the following summer a neuropsychologist diagnosed me with nonverbal learning disorder, which is common among people with Turner syndrome and usually presents itself in the form of low nonverbal skills, issues with spacial reasoning, social difficulties, slow processing time, and perfectionism as well as compensatory strengths in verbal skills. The diagnosis explained so much. It explained why making friends had always been so difficult, why it took me longer than most to learn new information and complete various tasks, and why I could be such a perfectionist particularly with my schoolwork. It also legitimized my need for accommodations in the eyes of the school’s administration going into high school, which was a relief.

Life improved in high school. I took advantage of opportunities to travel abroad, cut my hair to a more comfortable length, wrote for the school newspaper, gained the confidence to take advanced placement courses in European history and English despite my parents’ initial discouragement because of my learning disability, and still found the time to write my first attempt at a novel. Plus graduating from growth hormone replacement therapy to estrogen/progesterone replacement therapy allowed me to catch up with my peers in terms of physical development, which helped to resolve a lot of the social awkwardness I had been experiencing. At the same time this transition also meant going through a rough adjustment period. After starting a regiment of “birth control” pills to induce menstruation it took time to find the right medication, which meant I had issues with irregular periods. I remember my first period was at the age of sixteen and lasted for a whole month and it wasn’t the last time either. For a while I can recall having a long period like this roughly every three months and would need to go on progesterone for ten days to stop it. This lasted until my doctors and I finally found the right balance of hormones.

Still through all of its difficulties and benefits going on estrogen and progesterone replacement therapy seemed like the next logical step at the time. I had been told all my life I was a girl, would grow breasts, menstruate, and be attracted to boys. Going on this medication was presented as the next step in the treatment of Turner syndrome to ensure all of those steps happened for me. I had no resources to explore other options or seriously question any of the messages I was receiving about my gender and my body from doctors and the larger society. All the literature I read on Turner syndrome upon my diagnosis stated only girls had Turner syndrome, all of the people diagnosed with Turner syndrome I met identified or at least presented as girls and women, and no one ever made any references to anything beyond the binary or how you can still be a woman without breasts and a menstrual cycle. There was certainly no mention of sexuality in these materials let alone people with Turner syndrome who are not heterosexual. The only option at the time was deference to parental and medical authority, which meant adherence to certain cultural beliefs and expectations. This included the cultural belief that to be a woman is to have certain secondary sex characteristics and exclusive attractions to the “opposite sex” as well as the expectation that this category of “woman” is one I must belong to unquestioningly and unambiguously for the whole of my life because a doctor said so after a quick glance at my genitals when I was only seconds old. Given all these factors the decision to go on hormones was not really a decision at all. There was no real discussion about it, no consideration of how my identity might develop, nothing.

All the while I went forward with hormonal treatments and still felt different in a way I couldn’t explain. Most of my peers loved wearing dresses and putting on makeup and never expressed a desire to wear a suit as well as dresses on certain occasions, go without makeup most days, keep their body and facial hair all the time, or even feeling ambivalent about their breasts at times like I did. Even though I knew I could still be a woman and choice not to shave, not wear makeup every day, don a suit, and feel indifferent about my breasts sometimes, in my case there seemed to be something else going on at a deeper level that I could not explain. All I knew was no one seemed to feel the same way about their gender I did and it left me wondering what it all meant. Why am I not like the other girls? What’s going on with me? In short I was still confused, but having no words or role models to turn to all of these questions were buried underneath massive piles of internalized oppressions, fear, and insecurity.

Looking back on what this time was like I have a memory of my teenage self lying awake in a hotel bed with a burning question. I can’t remember exactly how old I was or where I was staying or why I was traveling. All I know is I was probably in my mid-teens and was likely traveling with my family on one of our annual family vacations. Lying there in the dark I began to wonder if I was bisexual. At the time it was difficult for me to say anything on the subject since I didn’t have much experience even in the way of crushes on anyone, male or female. In the end I concluded I was not bisexual. I just couldn’t think about being different in more than one way let alone begin to contemplate the nuances and complexities of being differently gendered specifically. This mentality continued for years.

What finally saved me was the coming out of a family member. Shortly after I turned sixteen one of my grandparents came out to me and my younger brother as a transgender woman and almost immediately we saw the parallels in our journeys. I can still remember the two of us sitting together on my parent’s family room floor and talking about our experiences with hormone replacement therapy the same day she came out to me in person. Finally, I felt understood. Looking back, I was probably identifying with her on an even deeper level as my own identity was developing in a direction more similar to my bisexual, transgender grandmother (who I now call Gran) than the rest of my heterosexual, cisgender family members. Still I needed language to explain it.

The first word I gained was intersex, which refers to those who’s chromosomes, hormones, gonads, and/or genitals are not considered standard for male or female. I was a senior in high school and had agreed to participate in a panel on families and gender transition along with both of my grandmothers and my aunt. In preparation Gran had written our bios for the event. She showed me mine, which described me as a heterosexual, cisgender woman. Gran then asked me if I felt that was accurate and I said, “Yes.” At the time I was very inexperienced sexually, had only just learned of the term cisgender, and had absolutely no concept of the variety of genders besides male and female out there in the world. I just didn’t know there were any other words to describe me. Then Gran surprised me when she said she wondered if I identified as intersex. Next thing I remember I was researching all I could about this new term and was stunned to find how much it fit how I felt about myself, my body, and my experiences as a person diagnosed with Turner Syndrome going through puberty with synthetic hormones. At the same I felt I had been kept in the dark about a significant part of my identity. All of my life there was a word for who I am and a much wider community of others like me and no one told me. No one told me there were entire groups of people like me who’s bodies didn’t quite fit into the narrow categories of male and female. Once I knew of the wider intersex community I couldn’t completely avoid the questions this new terminology and the diagnosis I had received years earlier posed for my identity: Who am I? What am I? What does this mean for my gender, for my womanhood?

Meanwhile I was also starting my first romantic relationship with a boy. Looking back, we weren’t compatible, but at the time it seemed like a good fit and I still don’t regret it. Yet I can now acknowledge I stayed in that relationship for as long as I did partly out of my subconscious fear of rejection on account of my intersex status and deep need for affection as reassurance of my worth as a desirable partner in spite of my sterility. It took leaving home and gaining some independence to get past these fears and see my own worth.

College opened a whole new world. I moved to a small college town in a neighboring state, met new people, and joined groups like Student Senate, PRIDE, and the campus feminist organization. In my academic life I took classes in new subjects including religion, women’s and gender studies, and anthropology with names like Reading the New Testament Through Marginalized Eyes, Gender Activism in a Global Context, and Participating in the Divine. There I found a passion for a social justice and conducted research on hormone replacement therapy among Turners women, investigated masculinity and virginity in the Gospel of Luke, the feminine divine in Christian traditions, and conducted a series of oral history interviews with my grandmothers on their experiences as a trans-cis couple.

In my personal life I gained more confidence and eventually left my significant other after three years of being together. We had been drifting apart since I started college and it was becoming clear the relationship was no longer healthy for either of us. After a period of grief for the loss of my first relationship and the death of my dog from old age, I started to branch out and allow myself to explore the full scope of my sexuality as a newly single person. I started to really internalize the lesson that people with Turner syndrome, like everyone else, come in all sexualities and this part of my identity was worth exploring. Gradually I became comfortable with my attraction to a cisgender woman classmate I was getting to know as well as others who did not identify as men to my knowledge. I even got to the point of coming out to family and friends as bisexual starting with my grandparents and my younger brother. Throughout this process I had fairly positive reactions and overall felt comfortable in my sexual identity, but something still didn’t quite feel right. Something was still missing.

By the time I graduated from college I had some important questions about my gender. Why did people asking for my pronouns tend to leave me somewhat uncomfortable answering only she/her/hers pronouns and wondering if there was more to the story? At the same time why did answering only they/them/theirs pronouns not feel right either? Getting others to alternate between singular they and she/her/hers pronouns seemed like it would be too much of a struggle in most cases. I didn’t know enough about other pronoun options to feel completely comfortable using them for myself. I knew he/him/his wouldn’t feel right. I just couldn’t explain it. Most of the time I felt the term woman described me well, but there were also times when I felt the term didn’t fit me entirely on its own. The same was also true of the term nonbinary by itself. At least I knew the term man didn’t work. It was all really confusing, but I was beginning to develop a new vocabulary complete with words like nonbinary, genderqueer, demigender, and gender fluid to explore and help me in my quest for my authentic gender identity; an identity I like to describe these days as woman, but not strictly so and not entirely fixed either. The truth is my identity is complex and always evolving. It very well may be a month from now I will be using different words to describe my gender identity and expression and that’s okay. Everyone should be allowed to experiment and change their mind. I’ll just have to wait and see what the future holds.

For now, I am on a year-long hiatus between college and graduate school. It has given me the time to read, earn some money as a part-time filing clerk for a small insurance agent, and further explore new terminology and forms of expression. The more I learn the more questions I have, which means I am always figuring out my gender and my identity as a whole. Still I proudly live and move along the blurry borders between and beyond male and female, straight and lesbian, cis and trans, binary and nonbinary. It is a wonderful, complex, and beautiful place to live. This space is my birthright no matter what anyone else has to say about it, because at the end of the day I am who I am in all of my complexity and nothing can change that fact.

What about you? Where do you live and move? How do your identities intersect? What words do you use? What are your edges like? What’s your story?