Intersex People in History: Who is Cheryl Chase (Bo Laurent)?

While intersex people have existed for as long as humanity has existed, we are often left out of the historical narrative. This series of posts seeks to address this gap in showcases important figures in intersex history. To begin let’s focus on the pivotal leaders of the early intersex rights movement, Bo Laurent, better known by her pseudonym Cheryl Chase.

Cheryl Chase (August 14, 1956) is an American intersex activist who is best known as the founder of the Intersex Society of North America (ISNA). At birth Chase was assigned a male sex and given the name Brian. At the age of eighteen months it was discovered she had ovaries and a uterus. A clitoridectomy was performed, her parents obtained a new birth certificate, changed the child’s name to Bonnie Sullivan, moved to a new town, and began raising their child as a girl all under the advise of medical professionals. Chase did not discover what had been done to her until the age of ten and did not gain access to her medical records until the age of twenty-one. What she found shocked her. At the age of thirty Chase had a nervous break-down that prompted her to research intersexuality. This time what she found left her feeling less alone and determined to spare others from what she had experienced.

In 1993 Chase founded ISNA in an effort to increase intersex visibility, oppose medically unnecessary and irreversible interventions like early genital surgeries like the one Chase herself was subjected to as a child, and improve intersex health care. The organization was the first of its kind in the United States and played a major role in launching the intersex rights movement.

Along with founding ISNA, Chase also produced Hermaphrodites Speak! in 1997. The piece broke new ground as the first documentary to feature intersex people speaking openly about their experiences. It has been shown in dozens of film festivals worldwide as well as in university classrooms, medical school grand rounds, and professional conferences in a variety of fields such as medicine, psychology, and history.

As a patient advocate Chase has delivered Grand Round presentations at Stanford University, UCSF, UCLA, Albert Einstein College of Medicine, Michigan State University, University of Michigan, and others. Her presentation Sex Ambiguity: The Patient Centered Approach at the 2000 meeting of the Lawson Wilkins Pediatric Endocrine Society is considered to be a major patient-led breakthrough in medical reform.

As a scholar Chase’s work has been published in the Journal of Urology, Journal of Medical Ethics, and Pediatric Nursing. The historic 1999 Supreme Court of Columbia decision establishing human rights protections for intersex people relied heavily on Chase’s 10,000 word amicus.

Over the course of her career Chase’s work as an activist has been recognized the year 2000 Felipa de Souza Human Rights Award as well as in numerous publications. These publications include News Week, the New York Times, NPR’s Fresh Air, NBC’s Dateline, ethicist Alex Dreger’s Intersex in the Age of Ethics, social psychologist Suzanne Kessler’s Lessons from the Intersexed, and molecular biologist Anne Fausto-Sterling’s Sexing the Body, and medical writer Natalie Angier’s Woman: An Intimate Geography.

More recently, in 2005 Chase participated in the Intersex Consensus Conference, which culminated in the 2006 Consensus Statement on Disorders. The statement mainly a change in language within the medical community from terms many within the intersex community considered to be misleading and offensive such as “sex reversal,” “hermaphroditism,” and “pseudo-hermaphroditism.” Chase and allies believed medical professionals needed new, less offensive nomenclature in their work with intersex patients. They also believed the new terminology needed to be palatable to said medical professionals. Eventually the term Disorders of Sex Development (DSD) was agreed upon and is used in virtually all medical settings today and even among many intersex people themselves.

This change in language sparked a major debate over terminology within intersex communities that continues to this day. Some reject DSD terminology in favor of intersex language on the grounds the term “disorder” is unnecessarily pathologizing and reasserts medical authority over intersex bodies. For example, it is much easier for medical professionals to justify treating a “disorder of sex development” with corrective surgery than to perform irreversible surgery on an intersex person whose body is simply different from the average. Others embrace DSD nomenclature as a pragmatic, less confusing, and less politicized alternative to terms like intersex. For instance, many medical professionals find the term intersex to be abrasive with political connotations and it is much easier to persuade them to listen while using DSD nomenclature instead.

Ultimately, this shift in language represented the start of a larger shift within the mainstream intersex rights movement from utilizing methods that collectively confronted the medical establishment to taking collaborative approaches to achieving social change. The mainstream intersex rights movement continued to move in this new direction when Chase left ISNA in 2008 to work on the Advisory Committee of Accord Alliance, an advocacy group that was formed to work in collaboration with medical professionals to promote comprehensive and integrated approaches to intersex care. It is also during this time that Chase changed her legal name, Bonnie Sullivan, and started going by the name Bo Laurent in all aspects of her life.

Today, roughly a decade after the closing of ISNA and the founding of Accord Alliance, there is extensive debate within intersex communities over activist strategies. Some have embraced organization Accord Alliance and their collaborative strategies while others continue to favor more radical approaches in their activism. It is likely both of these methods will be necessary for creating social change into the future. Yet, no matter what the mainstream intersex rights movement will look like in the decades to come, Bo Laurent will always have an indispensable place in intersex history.

Sources and Further Reading

  1. Contesting Intersex: The Dubious Diagnosis by the Georgiann Davis
  2. http://www.isna.org/about/chase
  3. http://bilerico.lgbtqnation.com/2008/03/womens_history_month_cheryl_chase.php
  4. http://www.sfgate.com/living/article/PROFILE-Cheryl-Chase-Medical-Activist-Boy-or-2815701.php

The “I” Does Not Stand for Invisible: Intersex Pride and Remembering Queer History in the Trump Era

It’s that time of year again. It’s Pride Month, a time when the LGBTQIA+ community gathers to celebrate our history and the many ways there are to be queer with parades, festivals, music, and, of course, lots of rainbows. What a better time to spread some love and intersex pride?

For those who may not know intersex refers to those who were born to bodies considered non-standard for male or female in terms of chromosomes, hormones, gonads, and/or genitals and is the “I” in LGBTQIA+. Since intersexuality comes in a variety of manifestations we be can found in every gender, sexuality, class, race, ethnicity, religion, culture, region, and time period. Some of us are straight. Some of us are queer. Yet all of us have a stake in LGBTQIA+ liberation in a world where interphobia, transphobia, femmephobia, homophobia, biphobia, and acephobia form interlocking systems of subjugation in which any deviation from the gender binary in body, sexuality, expression, or identity is met with cruelty, abuse, violence, and erasure. There can be no intersex liberation without trans, gay, lesbian, bisexual, queer, and asexual liberation and vise versa. That is why intersex presence at Pride is critical. It is high time people learned the “I” does not stand for “Invisible.” We exist. We are not impossible. We are not disordered. We are not aberrations. We are here. We are everywhere.

So many of us have experienced shame, stigma, secrecy, and erasure living in a binary gender caste system that deems us to be impossible. Still we survive and even thrive. Yes, many of us have stories of pain, trauma, and shame that need to be shared, but we also have stories of joy, hope, and pride. Those are the stories we need to tell: stories of love and acceptance; stories of courage and hope; stories of wellbeing and vitality; stories of healing and perseverance; stories of pride. Let’s tell more of those stories for Pride month and all year round. The world definitely needs such stories, especially in the current political climate.

In the United States we are now living under an administration with a dangerous anti-LGBTQIA+, anti-woman, anti-immigrant, basically anti-every-minority-group, “America first” agenda. Every day brings new shockwaves. Federal bathroom protections for trans schoolchildren have been rolled back. Multiple attempts at a Muslim travel ban have happened. Deportations have increased. Threats to women’s healthcare and reproductive rights have multiplied. Environmental protections are coming under attack. The list goes on and on. At the same time many Pride events and the larger LGBT+ movement are being coopted by dominant capitalist, colonial, white supremacist, heteronormative, and patriarchal traditions in the form corporate, military, and police sponsorships. A good example of this form of cooption is Well Fargo’s sponsoring of Capital Pride while continuing  to invest in the private prison industry that harms so many queer and trans lives. Not to mention the respectability politics, biphobia, and transphobia that infects much of the mainstream gay (and sometimes lesbian) movement, which tends to focus only on privileged, cis, white, gay men and leave out women, trans people, gender nonconforming people, multisexual people, and people of color.

In the midst of the current administration’s dangerous agenda and the trends of cooption at many Pride events we must come together across our differences and remember the radical roots of Pride. The reason why we have Pride in June is to commemorate the Stone Wall riots. The first Pride was literally a riot. And it wasn’t just any riot. It was a riot with trans women of color at the forefront who sparked revolutions. We must remember this history and own it. After all, this is protest; not a parade. In our activism we must remember there can be no sexual or gender justice without ability, racial, economic, and environmental justice and recognize the necessity of intersectional praxis that centers the most vulnerable in our society.

That is why this Pride month I am recommitting myself to love and social justice work that is truly intersectional within my communities. I will tell share my story as an intersex person openly and honestly. I will enjoy the celebrations and wave my rainbow, nonbinary, bisexual, and intersex flags proudly. I will remember those have gone before me and resist injustice like they did at Stone Wall and beyond.

Introductions to Intersex Traits: What is Androgen Insensitivity Syndrome?

This is the second 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 characteristic 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 Turner syndrome, Congenital Androgen Hyperplasia, and cliormegaly. In this post I will focus on Androgen Insensitivity Syndrome (AIS).

AIS is an inherited intersex condition (expect for the occasional spontaneous mutation) that occurs in approximately 1 in 20,000 live births and results in partial to complete inability of the body’s cells to respond to androgens, which are the hormones commonly associated with male physiological development. Depending on the extent of the insensitivity, AIS can present in a variety of ways. Complete Androgen Insensitivity Syndrome (CAIS) in most cases results in a 46XY karyotype, undescended or partially descended testes, a short vagina without a cervix and no uterus or fallopian tubes. In some cases infants born with CAIS do not show obvious signs of the condition until puberty and are assigned female at birth without any question. In other cases the signs of the condition are obvious from birth. During puberty those with complete CAIS develop breasts as the body converts some testosterone into estrogen. However, they do not start a menstrual cycle without a uterus. Also, due to their insensitivity to testosterone, they grow little to no armpit and pubic and do not have any acne. Partial Androgen Insensitivity (PAIS) often results in an individual with a 46XY karyotype and ambiguous genitalia that can either be described as a large clitoris or a small penis. Here it is also important to note PAIS may actually be quite common and has been suggested to be the cause of infertility in many men whose genitals are typical in appearance.

Some of the most common medical responses to AIS involve medically unnecessary surgical interventions. These procedures involve removing internal testes and/or modifying genitals to appear more male or female. Along with these surgical interventions, there is also a history of parents and medical professionals refusing to disclose an AIS diagnosis to affected individuals. As well-intentioned as these responses may be they are actually problematic for many reasons, the most obvious being the fact these surgical interventions are mostly performed on infants and children who cannot consent. While it is true removal of internal testes is advisable in some instances due to cancer risks, cases of testicular cancer before puberty are extremely rare and there is no reason why such surgeries cannot be delayed until the individual is an adult with the ability to make an informed decision. As for genital surgeries, being born with genitals deemed to be ambiguous does not pose any physical dangers in and of itself. Unless the genitals in question have formed in such a way that bodily functions like urination are disrupted and the child’s life is threatened there is no medical reason to modify an infant’s genitals. Thus the reasons behind the surgeries performed on infants and children with AIS and other intersex conditions are purely cosmetic and often rooted in cisheteropartriarchy. A good example of this is the practice of lengthening the vaginas of infants and children with CAIS. The most commonly cited reason for vaginoplasty in these cases is to enable the female-assigned infant to one day have cis/heteronormative, penetrative sex as an adult. Under this line of reasoning there is absolutely no consideration of the various ways the individual’s gender and sexuality may develop over time let alone any concern for their future sexual pleasure should the procedure fail. After all she’s going to grow up to be a married woman and it’s all about her future husband’s pleasure, right? Once again such surgeries should not be imposed on anyone. Instead they should be offered later when the person is able to make an informed decision.

Beyond the physical and mental repercussions of nonconsensual surgeries there are the psychological consequences of secrecy regarding a diagnosis of AIS. While nondisclosure is done in the interest of sparing the individual unnecessary upset and confusion the actual lived experiences of those in the AIS community indicate such secrecy is actually harmful. Most people diagnosed with AIS who were not told of their condition have reported feelings of shame and confusion upon discovering they have AIS and advise full and complete disclosure from the beginning. A prominent example of this can be found in the narrative of Georgiann Davis, who tells of her experiences with AIS, nonconsensual childhood surgeries, and nondisclosure in Contesting Intersex: The Dubious Diagnosis as part of her investigation into intersexuality, intersex rights movements, and current diagnostic nomenclature. Along with her own story Davis also includes insights from interviews she conducted with intersex people on their experiences with medical terminology and practices.

Rather than approach AIS with secrecy and nonconsensual, medically unnecessary surgeries medical professionals, families, and individuals with AIS should work together for the well-being of those diagnosed with AIS in ways that respect their bodily autonomy and humanity. This means ending the imposition of medically unnecessary surgeries on infants and children and creating supportive environments free of shame, stigma, and secrecy. Above all individuals with AIS should take the lead in these efforts, challenging abuses of medical authority as necessary and supporting one another.

Access to support groups has also proven to be helpful for many individuals with AIS and their families, especially when first adjusting to a new diagnosis. An excellent example of such a group working today is the DSD-AIS Support Group. In this case DSD stands for Differences in Sex Development as opposed to the highly medicalized Disorders of Sex Development terminology that has been highly debated within the intersex community over the past decade. The group started out as a support group for women with AIS, but recent decades has branched out into a larger support group with a mission of, “Promoting support, education, and outreach to foster healthy outcomes for adults, youth, children, and families affected by Intersex/Differences of Sex Development.” This includes not only intersex women with AIS, but also intersex men, transgender, and nonbinary people with AIS and anyone else with an intersex trait and their families. Such support groups help individuals and families realize they are not alone, find resources, and exchange information. They can also be valuable educational spaces for medical professionals and others who wish to be allies to the intersex community.

Sources and Further Reading 

  1. http://www.isna.org/faq/conditions/ais
  2. http://www.isna.org/faq/conditions/pais
  3. https://www.childrens.com/specialties-services/specialty-centers-and-programs/gynecology/what-we-treat/androgen-insensitivity-syndrome
  4. http://aisdsd.org/
  5. Contesting Intersex: The Dubious Diagnosis Georgiann Davis

 

Book Review–Transgender Warriors: Making History from Joan of Arc to RuPaul by Leslie Feinberg

Why is there prejudice against trans and gender nonconforming people? When did it start? Where did it start? How did it start? These are questions Leslie Feinberg sets out to answer in Transgender Warriors: From Joan of Arc to RuPaul in a world that largely takes sexism, cissexism, heterosexism, transphobia, homophobia, and similar forms of institutional subjection for granted.

For the purposes of this analysis Feinberg utilizes the broadest definition of transgender possible in embracing the word as an umbrella term that covers anyone who transgresses gender lines. This includes groups as diverse as, “transsexuals, transgenders, transvestites, transgenderists, bidgenders, drag queen, drag kings, cross-dresser, masculine women, feminine men, intersexuals (people referred to in the past as “hermaphrodites”), androgynes, cross-genders, shape-shifters, passing women, passing men, gender-benders, gender-blenders, bearded women, and women bodybuilders who have crossed the line of what is considered socially acceptable for a female body.” Some of these words have gone largely out of use, others have been redefined, and entirely new words have been added since Transgender Warriors was written in 1996. Many of the aforementioned terms, including intersex, have even experienced contested belongings under any of kind trans umbrella whatsoever in recent decades. While these rapid language shifts may be confusing at times, these changes are actually a positive sign. The fact our language on gender is changing at all means people are actually talking about these issues and it is having an impact. Plus Feinberg’s technique of using the term transgender in the most inclusive possible can still be useful for emphasizing how the issues gender transgressors from drag queens to intersexuals face on a daily basis are interconnected. After all none of us are free until all of us are free.

Feinberg also makes a significant contribution to anti-imperialist struggles with a compelling examination the connections between the rise of class divided societies, patriarchy, and the rise of European imperialism. Coming from an explicitly anti-racist, Marxist position, Feinberg avoids analyzing cultures they do not belong to and instead focuses on the central role the emergence of class divided societies and European colonialism have had in the development of prejudice against trans people. An example of this can be found in how colonizers forced their binary gender system on native cultures who recognized more than two genders. In fact not only were gender variant people not oppressed, they were revered and played important roles in their communities. There is also evidence this was also the case in Europe at one time in the far distant past. However all of that changed in the transition from matrilineal, egalitarian, communal societies in which resources are shared to patrilineal, class divided societies in which the majority of the wealth is consolidated among small groups of powerful men through means of inheritance from fathers to sons, private land ownership, and exploitative rent collecting practices that serve to direct wealth away from the lower classes. Such a system also necessitated a rigid gender divide and eventually evolved into the forms of patriarchy, racism, classism, imperialism, homophobia, and transphobia that we know today. This new way of viewing history also implications for how live and seek change in the present.

In the interest of praxis Feinberg and connecting theory to lived experience Feinberg also makes connections between the historical research and her own lived experiences as a “anti-racist white, working class, secular Jewish, transgender, lesbian, female revolutionary communist.” These insights help to ground all of the historical theories covered in their meanings for the present context and brings the reader into Feinberg’s vision for a future free of oppression, a future in which everyone has access to their own history and is honored in their gender.

In the end I would recommend this well-crafted and well-researched book for anyone interested in trans history and social justice. In particular I would recommend to anyone who is gender transgressive and wrestling with the questions Feinberg poses. There is nothing as powerful as knowing one’s own history. Once any subjugated people realizes their marginalization is not an inevitable, ahistorical fact of life that has existed for all times and in all places, and can actually be changed in the present there is no going back.

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.