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We Need to Talk About Sam

By Lorelei

In America this month, Sam turned up at the hospital with severe stomach pains. He said he had wet himself earlier in the day, and the nurse who first saw him, wrote down that he was an obese man who appeared comfortable between bouts of pain.

While she wrote, Sam told her that he was trans, and that he had taken a pregnancy test that morning. He wondered if it was a false positive, yet in the noise and confusion of the hospital what made it into her notes was that he was a man with abdominal pain who had not taken his prescribed blood pressure medications. Determining that his condition was stable, he was marked as needing non urgent assessment and Sam was left to wait for help.

It wasn’t until several hours later that he was seen again and it was discovered he was pregnant. By then it was apparent he needed urgent care and things began to happen very swiftly. They found that Sam had a cord prolapse, which meant his baby’s life was in danger and when they tried to listen for it, they couldn’t hear the baby’s heartbeat at all. He was hurriedly counseled about what that might mean and then he was taken to the operating theatre for an emergency Caesarean section. Unfortunately, it was too late and his baby was stillborn. In the course of one day he went from being pregnant, to being the parent of a dead child.

It would be easy to consider this case to be the terrible result of human error and not a systemic flaw. The nurse, after all, should have listened more carefully to Sam and instantly referred him for urgent care. I don’t believe that you can do much about the existence of human error though. You can’t make humans less human, and in hectic and difficult work environments the potential for mistakes to be made will always be greater. So it is a systemic flaw to allow the space for this kind of incident to occur. We have to mitigate or reduce people’s ability to cause that kind of harm, unintentional or otherwise. The system did not recognize Sam as a female, as well as a transman, and if it had been able to do that the outcome may have been far less tragic. Any female presenting with severe abdominal pain would have pregnancy considered as a matter of course.

There are a lot of practical considerations that are not addressed when we only collect information about a trans person’s sex. Or when we simply alter someone’s sex marker to account for their gender identity. Failing to collect both the gender and the sex of trans people obscures their transness. It renders them invisible as a population in any data set. When you are an invisible population, you cannot advocate for your needs because it is so much harder to demonstrate them. It is also harder to construct an overall picture of how you are treated as a group, and what you are subject to in our society.

As a feminist, advocating for a system in which people’s sex and gender are recorded as a matter of course feels a little like I am advocating for a system that further entrenches gender into our society as though it is something worth preserving.

A lot of feminism is concerned with fighting against the rules, restrictions and expectations we are offered by gender, and in some cases with the abolishing of it entirely. I personally believe that gender is a bra worth burning, but It would be rude to do so when someone else is still wearing it; I think the notion that we each have an innate gender that may or may not correspond to the template society has associated with our birth sex just means we are getting to choose between a greater number of rigid templates, but for many other people (and not all of them trans) their embracing of gender feels like a kind of freedom.

To ignore the existence of gender just because it can be a problem would seem to miss the point entirely when there are such terrible consequences of doing so, and I believe that collecting more data is one plausible way to reduce harm.

Not acknowledging gender affects our statistics, as well, for everything from poverty and homelessness, to crime, and it seriously reduces our knowledge of the most consistent problems trans people are facing.

Some of the most concerning consequences of not collecting accurate information do appear in the field of medicine, because it is there, particularly, that your sex marker is a consistently vital piece of information. The information it offers is entirely obscured when changing it becomes the only way for many trans people to have their identities officially recognised.

In England, for example, the NHS offers people registered as female the chance to have regular cervical smears, and it writes to them to remind them to do this. Transwomen are receiving these letters because of the inability of the system to delineate between women and transwomen when both are registered as female. The harm in this is not that transwomen are having to shred neatly typed NHS missives, nor is it the waste of a good oak somewhere who hoped to be a reprint of a Tolstoy novel. The harm is that transmen, who are registered as Male and still have a cervix, are not receiving these letters. The risk then is if they get cervical cancer, it will be much more advanced before it is discovered, much more serious and a greater threat to their lives.

Many female specific types of care stand to be denied to transmen globally because of this confusion and Transwomen face similar issues over prostate checks and other Male health issues. Additionally, we know that drugs affect the Male and female body differently, so the complications of treating them as interchangeable are many, and affect quality of care as well as access to it.

Females are also known to have more adverse effects to drugs than males, and those effects are liable to more serious, as well. Part of this is likely to do with the fact that females are generally smaller, lighter and have different body compositions. It is possible that prescribing patterns are important, too. For various reasons female humans take more medications than males do, which potentially increases their risk of adverse drug interactions.

Throughout the history of western medicine the assumption has largely been that, besides our reproductive systems, Male and female bodies are basically the same. This has harmed women disproportionately, and while there is some effort beginning to redress this balance, for transmen who are registered as Male that lack of accounting for our differences would simply continue. Even if women are finally going to see more consideration for their unique needs. One of the many places this becomes evident is in pain management.

A 2005 review of research in the journal Pain found that 79 percent of pain studies only used Male animals. Of the rest, just 4 percent looked for sex differences. Yet there is a growing body of evidence that the factors that cause our pain are sex-dependent and that this should be accounted for if we want to successfully remedy people’s suffering.

There are even potential dangers in blood transfusions, which are a routine form of care that millions of people need every year. This time the sex differences impact males; A 2017 study suggested that when they receive blood from previously pregnant women they have an increased risk of dying. Previous studies found, more generally, that males who receive blood transfusions from women are at higher risk of death than those who receive transfusions from male donors. Transwomen whose medical information lists them as female are, then, potentially put at risk.

Trans people have unique needs that don’t fit within the usual expectations of sex based care, too. So a system that only records their sex is flawed, as well. A transwoman may require, for example, breast exams and mammograms which she may not be given access to if the data available only comprehends her as Male.

The Transgender Centre of Excellence calls the system that would have recognised Sam as both female and trans, the “two-step” method. They consider it to be far superior than a single question that asks for a patient’s sex, even where it includes a third option of transgender, given that not all trans people when offered the choice will choose that box but will instead still tick either their sex or the one they feel an affinity with. Thus remaining unknowingly obscured in any resulting data.

I originally saw the Transgender Centre of Excellence advocating for this when discussing HIV patients, but it is their more general position as well. With regard to HIV, they highlight several reasons it really is important to have this kind of information, so I will quote them:

“Monitoring the continuing spread of the HIV epidemic is essential for determining public health priorities, assessing the impact of interventions, and making estimates of current and future health care needs. Accurate data collection is essential for dissemination of reliable and factual public information and development of meaningful education and prevention programs, and care services. Currently many federal, state, and local agencies inaccurately collect data about individuals' sex and gender. Most often, only one question is asked: What is your sex? or What is your gender?.”

They go on to say that this method is “too simplistic and binary to accurately and effectively collect critical information to assess HIV incidence and prevalence, identify emerging trends, allocate resources, improve health care services, and address service gaps among populations of individuals.”

The two step method attempts to remedy this and all the other issues by asking separate questions for birth sex and gender identity. Not only does it collect information, then, on how a person might wish to be referred to and treated, it also gives information about the kind of care they might require.

The example they give of what it would look like is here:

GID census.jpg

This seems to be a massive improvement on the current system and though many agencies and authorities have ostensibly taken this up, it is applied unevenly and haphazardly at best. Some of this is to do with the flaws in the computing and electronic systems we currently have in place, and the overhauling that would be necessary in order to make this standard practice. I’d like to think if we had more audible, and better, public conversations about this, the implementation of a more helpful system would be speeded up.

The New England journal of Medicine decides to take things one step further and it advocates for a system in which birth sex, gender identity and legal sex are all collated.

It is true that more data is often useful, and there are reasons to consider this thoroughly, but there is also a point at which utility might require us to streamline information rather than continue to increase it. We have to work out where that point is. In particular this suggestion raises the question of whether legal sex, rather than gender identity should be the second step in the two step method.

There are two objections I can see that people might raise to that. The first objection is whether or not the concept of a legal sex that is different to your biological sex actually makes any sense i.e sex is immutable so it constitutes a legal fiction to change a person’s listed sex, except in the rare cases where an error was originally made. In the context of a society in which sex is not, as it should be, a simple description of a material reality, though, but instead a loaded designation from which gender, or the set of ideas and rules we call gender, are extrapolated from, it doesn’t seem quite that simple. The sex we are identified as belonging to has wide implications for all of us. Just as it is sometimes dangerous for trans people to have their sex mis-indentified, one could argue that in other situations it becomes at least as dangerous for them to be identified as their birth sex by society. That identification becomes another possible route to harm and prejudice. The perfect solution to this is, of course, to be a kinder more decent society and allow sex to be a mere piece of data, rather than a cudgel with which to hurt those who do not conform (as well as to hurt women as a whole reproductive class) but I’m sure someone was crunching an apple back during the time of the crusades and fervently wishing we were less horrible to each other, then, too. We can’t really rely on us getting a serious case of the Kumbuyas.

The second objection is that not all trans people have, or have access to, the possibility of changing their sex marker, so they are once again obscured by any data that does not consider that. (And those who don’t have this access suffer as a result. There’s a rock and a hard place feeling to what trans people face with this. If they do change their sex marker, they risk certain harms, but if they don’t they may face others harms, or difficulties, particularly of a social nature such as with regard to housing, employment and safety).

It seems almost impossible to account for all the nuances here, but birth sex and gender identity still seem like they might be the best two data points to work with, at least as a starting point, given that the inclusion of the second category could manage to encompass all trans people and would sufficiently address the problem of their invisibility in data.

It doesn’t begin to address the standard of healthcare trans people get specifically, or how neglectful that can be. Nor does it address how all people with dysphoria are currently at risk of even less thoughtful care and support, as our cultural conversations about gender politicizes their experiences, but it does at least mean certain serious risks can be avoided.

Crucially too, it may mean that over time there is a proper demographic space for trans people that I would argue does not yet properly exist, and that they need for exactly the same reason all of us needs a space in society that properly accounts for our existence.

When it comes to medical issues, not all of them will be as tragic as Sam's, but when even something as seemingly unimportant as a letter that is never posted can turn out to be a matter of life or death something needs to be done.


Sources:

Stroumsa, Daphna, et al. “The Power and Limits of Classification — A 32-Year-Old Man with Abdominal Pain.” New England Journal of Medicine, vol. 380, no. 20, 2019, pp. 1885–1888., doi:10.1056/nejmp1811491.

NHSChoices,NHS,www.nhs.uk/common-health-questions/sexual-health/should-trans-men-have-cervical-screening-tests/.

Marill, Michele Cohen. “Women's Pain Is Different From Men's-the Drugs Could Be Too.” Wired, Conde Nast, 22 Mar. 2019, www.wired.com/story/womens-pain-is-different-from-mens-the-drugs-could-be-too/.

Rettner, Rachael. “Bad Blood? Why Transfusions from Women May Be Risky for Men.” LiveScience, Purch, 17 Oct. 2017, www.livescience.com/60702-blood-transfusions-women-men.html.

Deutsch, Madeline B, et al. “Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group.” Journal of the American Medical Informatics Association : JAMIA, BMJ Publishing Group, July 2013, www.ncbi.nlm.nih.gov/pmc/articles/PMC3721165/.

“Center of Excellence for Transgender Health.” The Center of Excellence for Transgender Health: Recommendations for Inclusive Data Collection of Trans People in HIV Prevention, Care & Services, transhealth.ucsf.edu/trans?page=lib-data-collection.

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