Nineteen years ago, on a cool October morning, I flew from Toronto to Boston to act along with Max Beck, a vital and committed early ISNA member, as the two public faces for the Intersex Society of North America (ISNA) to protest the American Academy of Pediatrics’ annual convention.
Max and I were lucky enough to stay together at the apartment of Riki-Anne Wilchins, a woman who was a friend to bo laurent, founder of the ISNA and funder of my airplane ticket to Boston. bo was not yet “out” in the public eye as an intersex(ualized) person, and was still publishing most of her work under the Cheryl Chase pseudonym; for this reason, she asked if I and Max would be willing to act as public faces for the movement and attend the AAP in Boston to speak to the delegates there. When I agreed to go I thought only of our success earlier that year in addressing a conference of cosmetic surgeons held at Mount Sinai hospital in New York, and gave no thought to my non-American citizenship. The earlier conference panel at Mount Sinai was filmed by Suzanne Kessler. It benefitted also from the support of Edward Stein, a philosopher and law professor who would work together with Betsy Driver, founder of Bodies Like Ours, in 2005 to hold a full day symposium at Yeshiva University, and also help Betsy and a team of law students to publish a special issue of the Cardozo Journal of Gender and Law to examine the state of critical intersex studies in 2005.
When I agreed to attend the AAP meeting in 1996, I was under the impression that we were being similarly provided with a venue to address the medics as had been possible at Mount Sinai. To that end, I wrote my usual 20-minute long research-based statement on the ethical and legal injustices of typical surgical interventions; that paper eventually formed a part of my book, Intersex: A Perilous Difference. Max had written something rather more personal, but grounded in dialogue with work Max was carrying out on children’s development and autonomy and trauma survivorship. Neither of us would end up delivering the talks we had written.
When we arrived on the morning of the 26th at the Boston Convention Centre we learned that we were not, in fact, on the schedule, and we were met with considerable hostility when we attempted to figure out what had happened. It remains unclear to me to this day whether we never had an invitation to speak, or if it was revoked. However, it became clear at the main entry to the convention centre that we were going to have to rethink our strategy to be heard. We had material that we wanted to deliver, and had travelled considerable distance, undertaken some considerable personal risk in deciding what to say and to put our faces on the line for the opportunity. We were not prepared simply to disappear. So, Max and I, well, we were hardly going to skulk off without an attitude of resistance and refusal were we?
That said, there was the small matter of my non-US citizenship. As a Canadian who was being threatened with arrest by the security patrol at the convention centre, I felt that I could not simply storm the building. There was some back-and-forth about this with some of our allies who had come to support us: Riki-Anne Wilchins, a founder of the American activist group Transexual Menace, had come with some Transexual Menace members and was prepared to take a more militant stand inside the convention centre. In the end, however, probably because I simply refused to risk forever my future right to enter the United States, and because it was clear that our initiative could not progress if one of the two intersex delegates simply refused to participate, we decided to garner whatever attention we could on the main entry stairs to the convention centre. That decision was probably significant because while the Mount Sinai panel had perhaps made some useful professional inroads, going outside the convention centre took our issues to the much more public level of the street, and, hence, to greater levels of engagement with the larger public.
For 2 years, ISNA had been sending out a newsletter titled “Hermaphrodites with Attitude” – a caustically cheeky title that refused to be ploughed under into shame at finding the term “hermaphrodite” or “pseudo-hermaphrodite” in all of our medical records. As early ISNA founders, we were all treated between the mid 1950’s and early 1970’s when the language of various ‘hermaphrodite’ labels persisted.
My memory is no longer completely clear, and I do not recall if we went off to make signs and regroup that afternoon, or the next day. Regardless, Max, myself and a dozen or so allies, including David Valentine (at the time an anthropology grad student at NYU who has since published his very astute monograph, Imagining Transgender) and Riki-Anne Wilchins, and some folks from an organization called “Middlesex” (located in Middlesex, Massachusetts) unfurled our banner out front of the Boston Convention Centre, handed out leaflets, and spoke personally for hours with the clinicians, surgeons, nurses, and social workers who were attending the convention.
There were some who simply dismissed us, but there were a few surgeons and pediatricians who actually stopped to listen. Some were aware that the Gay and Lesbian Medical Association had already endorsed our position against so-called “normalizing surgery”, and they were genuinely interested in hearing from adults like Max and myself about what the long-term effects of the early interventions were. With some, I was able to share more than just my own story, and to give the numbers I had on testimonies from other adults… and even from parents who were feeling intimidated about how to care for their infants caught in the snare of then-current pediatric standards of care.
The AAP must have felt tremendous pressure was suddenly on them in an arena that they were unaccustomed to having scrutinized at all. The organization actually released a statement to the press that outlined the approved standards of care for the diagnosis and management of intersex in infants and children. It was released in the middle of our day of picketing, and we received a copy of it through a fax that someone brought to us. Of course, the official statement gave us a bullet list that we could address directly, and so while it initially annoyed us to receive it, the AAP did us a favour by setting terms that we could focus our challenge on.
Foremost, it is important to remember that all this took place in 1996, at least 20 years into well-established claims that early, “barbaric” attitudes and aggressive surgeries had given way to more refined and moderate surgical approaches. But Max and I were both young, in our mid/late-20’s, and both of us had had surgeries relatively late in childhood; neither of us had experienced a gentle or respectful approach to our bodies, and I knew for certain that my own surgeon had gone on within months of performing my clitoral “reduction” in 1974 to a position at Johns Hopkins, where he would live out his career. That surgeon, Robert Jeffs, was on the programme for the conference, and I certainly harboured a lot of anxiety about what I would do if I were to come face-to-face with a man whose name-tag announced him as Jeffs. It did not happen. If he saw us, I will never know. But, yes, I felt sick at the thought that I might see this horrible man who had viewed my tiny, 7-year-old body as abhorrent before surgery and as presenting a “pleasing cosmetic result” afterward.
That anxiety, however – and perhaps especially because it was energy spent on a possibility that did not come to pass – is one that I would soon come to wish I had not shared with Cheryl/bo. On the afternoon of our demonstration, after we packed it in for the day, feeling pretty brave and triumphant for having spoken with dozens and dozens of conference attendees and with a French Documentary film crew, Max kindly went on an adventure with me to Boston Common so that I could take pictures of the “Make Way for Ducklings” sculpture to show my little boy, at the time a huge fan of the classic children’s book. When we arrived back at the apartment where we were staying, a copy of a press release that Cheryl/bo and Riki-Anne had authored was in our emails. I do not recall all of the content, but I know I was incensed that it had been written in part by someone who was not there, and without the voices of the actual intersex people who had been there. Most challenging though was a narrative that claimed that one of the intersex participants had collapsed in tears on the stairs of the conference centre after having confronted her surgeon. It never happened. Nobody collapsed in tears, and the press release was a gross distortion of my anxious musings. That was the moment that I split from ISNA.
I resigned from my role with ISNA that week-end, suggesting that while I understood the goal of garnering sympathy for our cause with the issue of a press release that stretched the story, I could not endorse tactics that would distort the testimonials I or any other person might give. In the years since, I have not seen sympathy as a useful emotion to try to evoke, but rather prevail upon people’s sense of logic, fairness and principles of human rights and autonomy.
To the extent that ISNA managed that week-end to gain a toe-hold into public awareness of the breach of intersex persons’ rights and autonomy, then whatever the reasons for my departure, I still acknowledge the deep utility of our public stand outside, even if that stand had just been a happy accident.
But that event, that week-end in Boston, however imperfect started something much more public than ISNA had been able to accomplish in its founding years. Organizations like Bodies Like Ours and OII developed to fill in the gaps and to clear new spaces that ISNA was not. The work in Europe and Australia, along with the support of ILGA, has impressed me most of all.
Looking back on it, 19 years since, the only thing that I regret is that Max is no longer with us to see what our community/ies around the globe have accomplished from the spark we set that week. Sadly, Max died at age 42 in 2007, but many of us remember Max’s eloquence and patience, integrity and honesty, and we miss him.
I continue to research and write from a position that refuses to acquiesce or capitulate, to apologize for intersex difference; I do not see a future of freedom for us if we agree with medics that we are “disordered”, and I will have no truck with the various apologia made for making supplications to medical authority.
– By Morgan Holmes
October 14, 2015.
Morgan Holmes is a Canadian sociologist, and professor at Wilfrid Laurier University, Ontario. She is the author of Intersex: A Perilous Difference and the editor of Critical Intersex. Her academic work focuses on sexuality and queer theory, feminist thought; qualitative health research and law related to sexuality and health. Morgan has recently expanded her interests in intersex to other forms of bodily diversity and has begun a long-term project on families raising children with disabilities.