Episode 8 The Case of David Reimer; The Challenge of Taking Action in a Complicated World Part 1


Episode 8 The Case of David Reimer; The Challenge of Taking Action in a Complicated World Part 1


In this episode I talk about the case of a person whose life got caught up in a confluence of medical mistakes and errors that took place in a cultural space where sex and gender are surrounded by outdated belief systems.


Episode Transcript
- Over the last six episodes of My Butterfly Arose podcast, I've begun talking about what I am learning about sex, sexuality, and gender through the lenses of both biology and culture. This has included books about gender through the eyes of a primatologist, the experiences of a person born intersex, and a broader and deeper view of how intersex people in particular have been seen and treated by society, by medical professionals, and how intersex people see themselves. I also did an episode about some of my own experiences as a transgender woman. In this episode, I will talk about the case of a person whose life got caught up in a confluence of medical mistakes and errors that took place in a cultural space where sex and gender are surrounded by outdated belief systems. The outcome was very harmful to the patient and their family, and I think it offers a challenge on two fronts. One is to not look away from painful experiences in medicine, but to use them as a way to improve our system of medical care delivery. The other is the challenge of being recognized as an expert in medicine while maintaining a sense of humility in the face of a complex reality. To prepare for this episode of Butterfly Arose, I read the Kindle edition of the book as Nature Made him the boy who was raised as a girl by John Lopinto. That boy was given or referred to by different names over his lifetime, but ended up claiming the name David Rimer, and that is the name I will use here. He was born in identical twin in August, 1965. His young parents, John and Janet Reimer, lived in Canada and had moved to the city to escape what they felt was a limited worldview they grew up in in their first months. Their mother, as Mr. Cola Pinto says, examined their son's penises and noticed that their foreskins seemed to be sealing up at the tip and making it difficult for the boys to pass water. She took the babies to see her pediatrician who explained that they were suffering from a condition called theosis. It was not rare, he said, and was easily remedied by circumcision or removal of the for of the penis Circumcision when done is usually performed on newborn babies, but by this time the boys were eight months of age. This meant that they had to be anesthetized because at this age, they would likely feel and react more strongly to the operation than a newborn baby. The doctor who did the operation on David is described by K Pinto as a general practitioner who was less experienced at doing circumcisions than knows who usually did them. Apparently none of the more experienced practitioners were available. For some reason, she used an electric cauterizing machine rather than a scalpel to remove David's foreskin. The machine was set at the minimum, but failed to cut through the skin after increasing the amount of heat going through the needle twice. The result was a botched circumcision. You could read the book yourself to see the horrible details, but in the end, David's penis was completely destroyed. So right away we have two mistakes. Having a doctor do the circumcision who was less experienced, and then that doctor would, her first attempt failed, just kept increasing the heat rather than stopping and figuring out a better way to proceed. The ability of surgeons in the 1960s to create a new penis so that at least David could urinate through. It was in the very early days and hope that even that could be successful were as Kop Pinto quotes, the doctors as saying, quite optimistic, the older brother's FAMs problem later cleared up on his own and he never got a circumcised. An article I read from the National Institutes of Health says that studies from 1949 and 1968 showed that circumcision was not needed in most cases of FAMs. Perhaps watchful waiting could have been used, but the doctor who operated on David might not have known that, or maybe she was reacting to the mother's distress over her son's difficulties and thinking that she was being supportive by doing the operation immediately rather than waiting, but both boys were taken home as David's parents worried about what to do and how this would affect his life. He was evaluated by Dr. GL Adamson, head of the Department of Neurology and Psychiatry at a nearby clinic. Mr. Lopinto quotes the doctor as saying he will be unable to live a normal sexual life from the time of adolescence that he will be unable to consummate marriage or have normal heterosexual relations in that he will have to recognize that he is incomplete, physically defective, and that he must live apart. Just note those last words of the doctor. Of course, without a penis, David would not be able to experience penile vaginal sex, and that was a physical fact he would have to live with. But saying that he will be incomplete is a definition of him that imagines his whole self as being defined by the lack of a penis and saying he will have to live apart has truth, only insofar as the society around him chooses to treat him negatively rather than embracing him as a fellow human being who just has a challenge not of his own making. What if the doctor had instead said something like the following, your beautiful son has experienced a serious medical error by the doctor, and it will be a real challenge for both him and the medical world to deal with, but we are here for you. We will try to connect you with researchers, surgeons, and doctors who are working on a fix for this problem. This presumes a world more like today where patients and families have more input into improving how healthcare is delivered. What if there had been a group supporting those whose sons experienced this trauma? What a difference either one of those could have made in the life of this family. Mr. Lopinto, in many ways does a good job of describing the dilemma of David's parents as they grappled with what to do for their son. They wondered whether he would be ostracized and bullied because he could not stand and pee like the other boys. How would the family, including their other son be treated? The local newspapers soon printed stories about their case, even though no names were given in the stories, this publicity left them feeling even more isolated. The parents stopped going out very much afraid that a babysitter would spread gossip after changing David's diaper. In addition, his father, when he mentioned what happened to friends at work was treated to jokes for the parents. All this was disheartening. John and Janet Rimer took their boys home and did the best they could with their situation. They worried that there was no fix for David's destroyed penis. Everything seemed to reinforce John and Janet's fears and feelings of isolation. The words of Dr. Adamson, for example, are riddled with unexamined beliefs. What is the definition of a normal sex life? Even the idea that a marriage needs to be consummated by vaginal penetrating sex is filled with cultural assumptions. Many people enjoy sexual pleasures in ways that do not solely depend on penile vaginal intercourse, and this worldview leaves out the ways gays and lesbians can have full sexual lives without what the doctor is claiming is normal. In addition, the work mate's reaction of making jokes rather than offering sympathy or support perhaps reflects their own fear of being seen as different or at least a way of dealing with something that made them uncomfortable. I believe this is an example of when lack of scientific knowledge can combine with negative cultural beliefs to make it harder for people to be just accepted as they are or to find good solutions to hard problems, but the Rhymers thought they had found a potential solution. One evening in February, 1967, they happened to be watching a popular current affairs program on the Canadian Broadcasting Corporation. When they saw an interview with Dr. John Money, they listened as Dr. Money talked about his work doing gender affirming surgeries, and at one point a transgender woman was introduced in Mr. Coop Pinto's words quote until four years ago. Her name was Richard Ron and Janet Gaped at the TV screen. It was their first glimpse ever of a transsexual. It was one thing to hear Dr. Money talk about sex change in the abstract. It was another to see it with their own eyes. Ron and Janet could hardly believe it if they hadn't been told that Mrs. Baranski was born a man. They would never have guessed it. Even knowing it, it was hard to believe she looked like an attractive even sexy woman. The way she moved, walked, sat, even her voice despite an ever so slight Huskiness had the timber of a woman's as she said hello to her host and fellow guest. Soon after the show, they contacted Dr. Money who agreed to meet with them. I just want to note a couple of things at this point. One is that the description in Mr. Op Pinto's books uses the terms trisexual and sex change. Most people I know who are transgender or her work and gender affirming care today would not use this terminology because we know that it is possible for your gender identity and physical sex characteristics at birth to not match. While gender affirming care can change your external sex characteristics and certain hormone levels in your body, it does not change your chromosomes or how you developed physical sex characteristics in the womb. Another thing to note is that in 1967, as it was until very recently, doctors and surgeons just assumed that for babies and young children who were born with a variation of sex characteristics or intersex, the right thing to do was to operate on their bodies to make them fit what the doctors believed would be their true sex. Happily, this assumption has been challenged by intersex people and supporters active in working for the rights of intersex people and in many hospitals and healthcare systems. Today, this would not be done. Dr. Money was one of those who arranged such surgeries for people born intersex and did some of the early research into people who had come out as transgender as well. He wrongly applied his beliefs and assumptions about people born intersex to David's situation. Let's also note that David was not born either with a variation of sex characteristics that would fit the classification of intersex or as transgender or non-binary. As he began to claim agency for his own life as a teenager and adult, he came out as the cisgender heterosexual male he was from birth, but David's parents were trying to figure out how to raise their son in a world not very friendly to boys without a penis or even those with a penis very much shorter than the average, a world with very negative beliefs about people who did not fit the image of two absolutely distinct categories of male and female with no significant variations or who are not heterosexual in their love lives and attractions. This is why the TV show and their conversation with Dr. Money turned out to be convincing for them. He offered the hope that their child could be raised as a heterosexual girl. This seemed to them under the existing cultural circumstances to offer the possibility of David being seen as a normal child living a normal life. When they spoke with Dr. Money in person, his words and body language exhibited great confidence about his theories and practices. As John Lopinto says at his book, after so many months of grim predictions, bleak prognosis and hopelessness, Dr. Money's words, Janet says, felt like a balm. Someone she says was finally listening. After talking with him and thinking about it for a while, they decided to follow Dr. Money's advice. In July of 1967, David was operated on by Dr. Money's colleague at his clinic, Dr. Howard Jones. David's testicles were removed and scrotum fashioned into a rudimentary exterior vagina. Dr. Money told David's parents that they must dress David and treat him like a girl starting immediately, and they must not tell him about the medical error that destroyed his penis or even that he was born with a penis. They must talk about him and treat him like a girl consistently for the process to be successful. He said ultimately it was not successful for David and in several ways his experience has similarities with that of Pigeon. Bogus Pigeon was born with a variation of sex characteristics that we call intersex. As I reported in episode six of Butterfly Arose pigeon was also operated on as a baby and their parents were told to raise them as a girl. I see four important similarities between their stories. In both cases, these babies were operated on for conditions that were not life-threatening. In both cases, the doctors were motivated in part by what they believed they knew in terms of medical and psychosocial knowledge. In both cases, the parents were told to dress their children as girls and treat them like they were girls and to never tell them about their actual condition, and in both cases, the doctors and the parents of these children were trying to navigate a culture in which Iex people and boys born with very short penises or who lost them to accident or medical error were seen through lenses of very negative stereotype. As Katrina Caris says in her book, fixing Sex that I reported on in episode seven quote, far from existing outside culture biomedicine is a cultural entity that not only has unparalleled discursive and practical powers to define and determine what it is to be normatively human, but also to withstand alternative constructions and challenges to its version of normativity unquote. Ms. Cartis goes on to say that historically, the effort to enforce the sex binary, even when a specific person's body did not conform to it, was also bound up with cultural fears and negative stereotypes about same sex attraction. Pigeon Pagon and David Rimer had bodies that were seen as outside the boundaries of normal for very different reasons, but they experienced similar and very harmful treatments. Both courageously faced their circumstances as they grew older and built lives that reflected their true selves. Both went on to rebuild emotional connection and trust with their families. In later life, David Reimer developed a remarkably nuanced view about the world He lived and grew up in. Colapinto quotes David Rimer on his experiences facing male chauvinism at work on page 263 of the Kindle Edition. The guys at work don't know what happened to me. I mean, I work in a slaughterhouse. All men can you imagine there's the freak who wore dresses as a kid. He imagines them saying They give you that male chauvinist crap all the time, like they're always saying that they're the boss at home. They look at me and ask me, who's the boss? I say, look, man, in my home, it's a partnership. It doesn't mean I wimp out. Sometimes I get my way and sometimes I don't get my way, but either way, it's a partnership. I mean, who wants a woman with no brains who follows you blindly? That's more like a slave than a wife? You don't want a slave. You want somebody with their own opinions, somebody who puts you on the right track, someone to show you the right direction. It's very hard to talk to somebody who's stone cold stupid who follows you blindly. Then Op Pinto further quotes David as saying, but you know, if I had had a normal life and none of this had ever happened to me, I'd probably be one of these chauvinistic kind of guys where the guy goes to work, breaks his back, comes home and sucks down a beer and watches sports, and if I saw someone like me out on tv, I'd sit there saying, oh God, that's sick. That's how I would be so knowing that this person is me, you could realize how sick I feel. Looking back on all this, you wish to God you could switch places with anybody. David's and pigeon stories were both hard for me to read, yet it is important that they were written. Part of the motivation for change in my experience comes from real life stories, but stories of individual people are just one facet of the information we need to create a better, more just and compassionate healthcare system. We are complex beings and much of who we are and how we develop defies simple answers. One thing that David's and pigeon stories reflects is an ongoing argument over the role of our biological processes versus environmental factors in our development from inception to adulthood. This has been called the nature versus Nurture debate. Dr. Money was one of several researchers and doctors who argued for a stronger role of nurture. This is part of the reason he gave the rhymers the advice to raise their son as a girl. On page 280 of his book, John Lopinto talks about David's courage and lets us know a reason why writing it was meaningful to him. He says, indeed, it was this very courage of David's, which was my prime motivation in writing the book. Despite its medical scientific context, I've always believed that this story transcends the incessant quibbling over the nature nurture debate. David's is a story about identity in its largest sense, not simply sexual identity. His story for all its uniqueness is a universal one and reminds us how it is every person's individual responsibility to define for himself who he is and to assert that against the world that often opposes ridicules, oppresses or undermines him. In the next episode of Butterfly Arose, I will go more deeply into what I've learned so far about the challenges medical researchers and doctors face as they work to develop knowledge about we humans that can help us live healthier lives and the role our existing cultural beliefs and human frailty can play in that work. Thank you for listening. Please remember, you can find the books and articles I reference in my podcasts on my emily p newberry.substack.com website. I have two pages with links for both of my podcasts.