What Does “Institutional Bias” Even Mean?

I’ve been having some interesting and challenging conversations on race recently. One of the things that seems most difficult for people I encounter to wrap their minds around is the concept of institutional racism. Raised on the belief that democratic law and justice are impartial, it’s hard for Americans to understand how a “system” can be malignant. The intertwined tendrils of race and class can make that even harder to parse.

For those of you who are experiencing that challenge, and trying to understand what “institutional” racism is or how it can decide the course of someone’s life, I’m sharing the following story. It’s a true story that happened to an upper middle class white woman. Those overlapping and conflicting issues of race and poverty won’t be a part of this, so they won’t detract from the ability to focus on the system.

Medically Insignificant

medical photoIt started out simply: in my early 40s, I had my tubes tied. When my periods became heavy and painful, my doctor acknowledged “that’s common when you stop taking the pill.” The periods got heavier (one lasted eleven days) and more painful, but after a while, I quit bothering to mention it. The doctor’s dismissal made it clear that it wasn’t medically significant.

When two years had passed, my energy flagged, my skin turned dry, and my hair became brittle. The doctor recommended a multivitamin. The blood tests showed that I was a little anemic, but that happens to women with heavy periods. She recommended an iron supplement.

When four or five years had passed, I started gaining five pounds a year despite my 1200-1300 calorie diet and regular exercise. My doctor empathized that middle age is tough on women. My symptoms were probably just perimenopause, she explained. She suggested I google “menopause” and learn more about the changes in my body.

Then came the day I got off a plane and noticed my ankles were swollen. When I got home a few days later, my elephant ankles had love handles.

The nurse ran blood tests to be sure I wasn’t in some type of organ failure. I wasn’t, but she did finally identify the severe anemia that had been clearly indicated in my blood tests for years. She checked for blood clots and referred me to a vascular specialist, who determined that one of my primary veins was being crushed against my spine.

The vascular specialist scheduled a procedure to map my bloodflow and insert a stent to hold the vein open. There was no discussion of the potential complications, or the (possibly lifelong) need for blood thinners, or the pain that patients encounter from that procedure. The only thing we discussed was the growth she found while imaging my blood vessels.

the author's malformed and distorted uterus

The 5-cm mass was one of countless fibroids that had distorted my uterus into an unrecognizable blob. Many times its normal size, the organ was shoving everything in my pelvis out of its way, and pressing that vein against my spine.

The fibroid farm (and, we’d discover, the endometriosis and adenomyosis) was the source of the painful and heavy periods, which in turn caused the anemia. It seems that’s also common when you stop taking the pill, but despite my ongoing concerns it had never occurred to anyone to check.

The stent was put on hold. My overgrown uterus would have to come out; that might even allow the blood vessel to recover on its own.

The hysterectomy would have to be done abdominally – they’d need a big hole to pull that thing through. The gynecologist wouldn’t know til he had me open whether the easier-healing horizontal cut would suffice (they’d expand vertically if needed), or whether he’d be able to leave my ovaries intact.

He warned me that the recovery from abdominal surgery was rough, and advised me not to get hung up on “goals” for recovery; just plan for two months of down time.

After years of severe anemia, I awoke from the anesthesia to find my ivory skin had gained color overnight. I didn’t know if that was normal – in fact, I had no idea what was normal, or what to expect. They’d be able to assess that over time – at the moment, it wasn’t significant. I was relieved to discover a horizontal incision, and hear that my ovaries were intact, so I didn’t have to deal with instant menopause, too.

I was able to get in and out of bed without much discomfort, but emptying bladder and bowels was painful. As in, “someone has reached inside my body and grabbed my innards with a searing-hot iron gauntlet” painful. Nobody had mentioned this, but it made sense once I thought about it. I took double doses of Senna to make sure I didn’t have to strain any muscles.

Once I could eliminate without pain, the “warning” that I needed to go – that feeling that your bladder is full and needs to be emptied – was still too subtle for my system to produce. Instead, once the need was urgent it would announce itself with an excruciating stab.

At my six-week checkup, I asked whether this should concern me.  The doctor nonchalantly assured me that it would pass sometime in the next few weeks as I healed.  The searing pain multiple times each day wasn’t medically significant. Eight months later, it still hasn’t returned to normal but at least the pain has diminished.

WebMD advised me I should be “fully recovered” at six to eight weeks. I certainly didn’t feel recovered. My doctor laughed and explained that eight weeks is the “insurance company” definition of recovered: I no longer required proactively scheduled post-surgical care. It would be another couple of months before I felt like myself again (other women suggested it would be twice that long). Other than acceptable activity, we didn’t have any other conversation about what “recovery” would look like after this final appointment.

The skin on my stomach is still numb.  When I asked, the doc explained that if it hadn’t recovered by eight weeks or so, it never would. Other nerves might grow in from the surrounding area, making the ‘hole’ smaller, but if the damaged nerves don’t recover within the first few months, they never will. It doesn’t hurt anything, he explained – blood still flows and the skin is still healthy. It’s not medically significant.

The dead spot stretches from navel to hairline, hipbone to hipbone. The part of my body that bothered me the most, the stomach that has grown too far outward with my swollen organ and weight gain, now feels alien. The tissue beneath is still tender; a brush against the kitchen or bathroom sink still hurts and I can’t yet wear jeans or pants with a waistband. Touching or scratching my skin is like touching someone else’s body, or touching a corpse. I still don’t know what to think of this weird change in my relationship with my body.

My legs and feet, constantly sheathed in compression socks, remain swollen. At ten weeks, I was able to put my tennis shoes on again, though I couldn’t wear them for a full day. At fifteen, I could wear the tennis shoes all day, and get my feet into my dress shoes. I still can’t get into my boots. The vascular specialist told me I’d need to wait eight months to a year to determine if the swelling will subside on its own. The stent may still be necessary.

At sixteen weeks, I began to ease myself back into exercising. I scheduled one-mile routes on my treadmill and walked them at an easy 2-2.5 mile per hour pace. On day four I awoke with my swollen legs aching too badly to continue. After two days off I was able to resume, though it made the line of my internal incision hurt.

I was supposed to feel better by now. The doctor said I should be back to myself, and I wasn’t doing anything difficult. I turned to the internet for insight, and kept walking whenever I was able.

After an hour or two of online searching, I began to recognize a pattern: medical sites would show me a sparse page and a few paragraphs about hysterectomy, shunted into a corner of a huge trove of information on reproductive health. Useful information about recovery came from message boards and forum sites.

Awash in information on reproduction and medically-assisted fertility, I was finally struck with the BFO (Blinding Flash of the Obvious): medically, the topic of “women’s health” is totally centered on childbearing.

I dug deeper, certain that I was just feeling sorry for myself, or that my search results were skewing what I was seeing. I asked my search engine different questions:

Google, how do we know when a girl will begin menstruating?

uncertainty photo

Turns out, we don’t know.  The closest I could come were some medical web sites that described the “stages” of puberty – in ways that did not at all match my own physical development. But then, I started having periods the month after I turned eleven, a year earlier than the average. Medicinenet told me very candidly that “the timing of the onset of puberty is not completely understood.”

I posted the “stages” to my Facebook page with the comment “It didn’t happen in this order for me.” Every woman who commented said the same.

We learn it the same way, all of us girls – one day, we go to the bathroom and discover that blood doesn’t always look red, and a favorite pair of panties (and maybe our pants, skirt, or dress) is stained. We wonder if this is “what we think it is,” and consult a trusted female advisor to be sure.

Once we are capable of reproducing, the medical knowledge is expansive. Photographs, images, and day-by-day explanations of what happens in the development of a fetus are easy to find. If you have trouble conceiving, information on medically-assisted fertility options is rampant.

Need to keep from breeding until an appropriate time? Get the pill, an implant, a patch, or a shot (which may give you cancer, migraines, weight gain, or continual light bleeding and increase your risk of blood clots and some cancers). Implant an IUD (which may fall out, embed itself in your uterus or ‘escape’ into your abdomen because we don’t really seem to know how to properly size them). Any long-term method of birth control involves placing the female body at risk.

Those risks are frequently minimized and poorly reported, leaving us ignorant of how frequently some of these complications occur. There has been research into a “male pill”, which has shown far less negative impact, but it hasn’t been released; it was considered too risky. For men, those risks are considered medically significant.

Like a prize cow, once you’re done bearing offspring, the options dry up again.

Google, how can you tell when a woman will enter menopause?

WebMD tells me that “if you’re over the age of 45 and skip at least three periods in a row, that tells us that you’re going to move on to menopause relatively soon.”

That’s the extent of our knowledge about two of the biggest transitions of female life: “it happens when it happens, and we don’t really know…” Any time between the ages of 40 and 60, if your body changes, your periods change, or you experience changes in energy and focus, that “could be” perimenopause. And if your symptoms look in any way related, your doctor often won’t bother to look further.

Since we don’t know how to tell when a woman enters perimenopause, we have no way to rule it out – so unless there is some other concrete diagnostic path to follow, doctors will most often wait it out, until they have some other reason to believe it might be something significant.

Fortunately, menopause itself is much more concrete.  Hot flashes and irregular menstrual cycles clue us in that we have started the process. When we go a full year without menstruating, we are officially “done.” Medical focus shifts to bone health and other known impacts of the decline of our sex hormones.

But a third of women don’t experience hot flashes. And of women in their late 50s, nearly a third have had a hysterectomy, so they can’t know when their periods would have stopped. In other words, there are a whole lot of women out there who have no way of knowing when their body reaches menopause, when those chemical balances start changing, and when they need to change the focus of the medical support they receive in order to properly care for their aging bodies. And medical science doesn’t appear to have any way to tell them.

The Role of Institutional Bias

My research hadn’t told me anything helpful, so I just continued to exercise the best that I could, and trust that as long as the aches faded with time, I wasn’t doing any permanent harm.

But it certainly got me thinking.

I thought about the Apple Health debacle, in which the “total health app” (designed and tested by men) shipped with no “women’s health” features – not even a period tracker.

I thought about the number of generations of medicine and medical research that had been conducted almost exclusively by men. Men whose only awareness of female-specific health was in terms of the ability or inability to produce offspring. Men raised in a culture in which a woman’s primary purpose was to serve as a breed cow, and where menarche and menopause were barely discussed among women, never among men.

And there was the second BFO.

Our medical knowledge reflects the interests and focus of the people who have amassed and funded it. What I was looking at was an object lesson in institutional bias.

institution photo
The Practical Effects of Institutional Bias

A medical system based in men’s concerns for women’s bodies, whose research has been focused on the role that women play in men’s lives – as childbearers – ignored me til it put my life at risk. And when it finally took notice of me many caring, concerned individuals unknowingly did the bare minimum they could do to address the issue. Giving me only the information that mattered to them, they left me in the dark regarding what my own body should feel like as they worked to correct their earlier disregard by cutting me open and throwing parts of me away.

My concerns, my well-being, remained “medically insignificant” until they rose to the level of a life-threatening incident.

 

It never occurred to my primary physician to look into the larger pattern of my symptoms. My complaints were complaints of vanity: the aging woman who doesn’t like her skin, her hair, her weight. They were complaints of comfort: get a hot water and a Midol, dear. That kind of pain is just part of being a woman.

After 40 years of periods, one might assume I know what my ‘normal’ pain is like. It was bad enough for me to ask a doctor about it – but that didn’t cause anyone to spend a moment considering whether it might actually be a problem.

We are told to speak up, to advocate, to ask questions. I did all of those things, for nine years. It wasn’t until I stepped off that plane, and they were concerned I had a major blood clot, that anyone took action.

 

I was 42 and childless when they tied my tubes, and 51 when they finally removed my uterus. Even so, the doctor (the same one for both surgeries) stepped delicately around the need to “remove my womanhood,” as though he were taking my identity from me.  He had been carefully trained that ending my ability to bear children could upend my sense of self. Even knowing my tubes were tied, he refused to “recommend” hysterectomy. He talked about options with low probability of helping until I concluded it was the right answer. He wouldn’t say it first.

The pain, numbness, and permanent changes to my body weren’t even on his radar. I had to search the internet to find information on the basics of what to expect during my recovery. He patiently answered every question – but the information I acquired was based on what I knew to ask.

The Invisible Impact of Institutional Bias

Let’s get the obvious one out in the open first: institutional practices whose creation is based on the biases of two centuries ago, tend to reinforce and propagate those biases. It becomes a chicken-and-egg conversation.

In the 1800s, medicine considered women “humans who could make babies.” So the only difference in treating men vs. women was around childbearing. As baby boomers swelled the medical ranks with the largest number of female doctors ever, our research has begun to show the harm this approach does.

  • The symptoms of heart attack taught to doctors are based on studies of men; women – whose symptoms present differently – often get turned away at the Emergency Room or have their heart attacks treated as panic attacks. Not only do women get refused appropriate treatment, Doctors learn from this that women are prone to panic attacks.
  • Menstrual pain is considered “normal” and “insignificant.” Women who complain of “female” pain are often dismissed – left for years with undiagnosed endometriosis or PCOS. Further, current research is showing that the ways we measure and understand pain overlook gender-specific physiology. In other words – what we think we know about pain applies to men, and the indications are that we have been underestimating female pain as a result.

But medical research is slow. It takes multiple repetitions to prove an observation, and can take years of work to understand how to apply or ameliorate it. If I had a daughter, these researchers’ work might mature in time to have an impact on her daughter. Because even when you see the problem in an institution, it takes generations to create effective change.

Often, the problems that turn up aren’t limited to that institution. The institution simply represents the inequities of the larger culture. Consider, for example, medicine’s approach to sexual health: Companies can opt out of including birth control on their insurance, even when it’s used for things like managing extremely painful endometriosis – but Viagra is covered, because we know that a healthy sex life is an important part of psychological well-being.

It’s considered a medically significant part of a man’s health, to be able to continue normal sexual function well after the point at which his body’s natural mechanisms decline. And yet, science cannot even provide a single, consistent description of what a woman’s orgasm is.

Our doctors are telling us that sexual satisfaction is essential to men, even well after the point at which, naturally, their ability to achieve it declines. It is so important that we should find and support ways to override nature and ensure this ability continues. Women, on the other hand – well, their sexual satisfaction isn’t sufficiently important to understand much less ensure.

Our doctors reinforce to our daughters that, when it comes to their well-being, if it’s “not a reproductive necessity,” it’s medically insignificant.

And so, by extension, are they.

Isn’t That Stretching Things a Bit?

I can see how it might feel that way. And, let’s face it – it’s uncomfortable to think that even when we are conscientious about our annual physicals and doctor’s orders, we might be taking awful care of our daughters without even knowing it.

But that’s exactly the point.

Nobody set out to make the medical system more lethal for women than for men. It’s just a natural side effect of a system that was created and organized by a group of people that didn’t include any women.

When Apple released their health app, women spoke up. The app has since been updated, and lots of women use it.  Lots of those women also use a second app for tracking women’s health info, because even though Apple made changes, some of those apps that involved women early on do a lot more. Eventually, Apple will catch up and women won’t need those other options. But we aren’t there yet.

Likewise with our medical system.  We’re beginning to see it, but we have a long way to go. That’s why there are still midwives, and doulas, and naturopaths doing a roaring good business. And it’s why even a financially stable white woman can spend a decade fighting to get anyone to pay attention to her.

So What Does That Have to do with Racism?

I could follow up a bunch of “medical risks faced only by women” with a long list of “how those results get worse in relation to the darkness of your skin.”  But – you can find all that on the web, and it won’t help you understand anything but the medical system.

We’re going to cast our net a bit wider.

skeptical photoThe medical system’s unintentional problems stem from “systems built by guys who just didn’t consider what was needed in order to also care for women.” Well-meaning, accidental – but also demonstrable and deadly.

Our legal and cultural system was established by well-meaning upper class white men, many of whom were slave owners. For centuries, from the 3/5 compromise to Dred Scott, our systems and the men who created them debated and negotiated over the extent to which a person with black skin was “human” vs “livestock.” For centuries, from the founding of this nation, they debated these subjects the way we debate the difference between pets and livestock, animal cruelty and mass production of beef. They argued over the treatment of slaves the way we debate the humanity of factory-raised chickens.

And those arguments made their way into the structure of our country.

Some of it was unintentional – well-meaning stuff based in the beliefs of the time, which has become problematic as our beliefs have evolved. Some of it was utterly intentional, rooted in everything from straight-up bigotry to more complex efforts to maintain an economic status quo that kept the poorest folks poor and the richest folks rich (and, for a century or so, kept the blackest folks enslaved).

Scholars were asked not “whether” but “in what way” black people were inferior to white people – and the answer created an entire, fallacious branch of study around the imaginary concept of “race” that has grown so strong that even the advent of DNA and its proof that there is no such distinction as “race” in our species cannot dislodge the belief.

From laws and rules that limit class mobility and actively create impossible barriers, to the religious and pseudo-scientific “conventional wisdom” that still marks our conversations and interactions, the systems upon which our culture rests are often rooted in efforts to maintain the slave owners’ status quo.

If we, as 21st-century humans, believe that science shows us true things – including the fact that all humans are one species – and if we believe that “all men are created equal,” then it’s important for us to recognize that our systems and institutions reflect the biases and beliefs of the men that created them. As our beliefs and understanding evolve and grow, it’s essential that we re-examine those systems to understand whether they reflect what we believe today, and how we believe our country and culture should work.

Tying It All Together

We have an advanced medical system, making breakthroughs in genetics and complex neuroscience. Designed and operated for centuries by men, that same advanced system is only just beginning to understand how to care for women. While we have added to and modified it, we still commonly experience situations in which women’s concerns – like mine – are ignored until they become potentially catastrophic.

Likewise, we have a legal and cultural system that was designed for white, property-owning men.  While we have added to and modified it over time, it still results in inordinate imprisonment and impoverishment of people of color.

 

Our medical system has some huge blind spots, like “teaching doctors heart attack symptoms that apply to men, resulting in women dying from heart attacks that could have been treated.” (Did you know that a recent study showed that half of medical students and residents believe black people can’t feel pain?)

Likewise, our legal and cultural systems place the lives of women and people of color in precarious places, from domestic violence to excessive, and sometimes deadly use of force against people of color.

 

Our medical system inadvertently reinforces cultural values that we are trying to outgrow – women as breed stock, whose only purpose is to reproduce. Our legal system reinforces cultural values that we are trying to outgrow – people as property, judgments of inferiority based on skin color.

Many of these were introduced accidentally, the result of culture, beliefs, and norms that no longer apply. Some of them were introduced intentionally, the result of bigotry, and a desire to ensure that “they” didn’t come to where “we” live.

Once we understand that the biases are there, and do impact our systems and results, this is the next point where things sometimes get contentious. People want to argue over whether it was really “on purpose.” But really, what’s more important – to agree on what happened two or three or four hundred years ago and why? Or to understand what is happening right now and start finding ways to change it, so that maybe our grandchildren will have a chance to see a different way?

I’d like to show you and convince you of the intent behind some of these things. but if we can’t get to agreement on that – I’m not willing to spend the time arguing with you. You’re here. You’re having the conversation. You’ve now seen how biases can subvert systems. If we still don’t agree about where it started, or why – but you’re here listening anyway – that’s too valuable to waste. So even if we can’t agree on the origins – can we agree that the subversion has to end, and talk about how to do that?

 

For additional information about how our systems and structures incorporate race, check out this site. (especially recommended: the “background readings” section)
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3 thoughts on “What Does “Institutional Bias” Even Mean?

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  1. You’ve laid this out step by step on how women’s medical issues become “medically insignificant” unless they’re directly tied to childbearing, and why it persists today. I’m sorry for all your experiences. Well done, in using this as a stepping stone to draw the parallel to how our “normal” embeds into institutional racism. We’re comfortably unaware from our positions of privilege. Here’s to changing these institutional isms one by one.

    1. It can be very difficult to understand a thing that you can’t see, and that doesn’t affect you. It’s hard to see them even when you want to, and are looking, and even harder for folks who really want to understand – but have never been affected by it and have no reason to ‘notice” it or know that it exists. I hope this will be an “example that anyone can relate to” – and a springboard for them to understand how much bigger a problem it is than my experience, however common it may have been.

      (And thanks for the empathy. I am grateful to have finally found the cause, and focused on working to recover from that decade of neglect. It could have been so much worse – so grateful all I have to worry about is one little vein and some weight loss!)

  2. This week, a viral image of human anatomy seems to have reinforced this conversation.

    See the original image – a human torso with the milk ducts of the breasts included – here:
    https://twitter.com/lemonadead/status/1119991452711387136

    The guardian had a great follow-up here:
    https://www.theguardian.com/commentisfree/2019/apr/26/women-anatomy-body-default-female-male

    See a more-medically-accurate image , and explanation of the various elements, here:
    https://www.sciencealert.com/don-t-freak-out-about-that-viral-milk-duct-image-it-s-not-actually-correct

    Why it matters and how it’s related: [from the guardian article]

    “Even without milk ducts, the scientific images of human bodies that we typically see have male builds and musculature. Troublingly, we don’t even necessarily identify them as male and therefore specific only to half of the population. We see them as “normal”.

    Let big data unlock the secrets of our bodies
    Ida Tin
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    “And that means female bodies are the abnormal other, even if, numerically, we make up more than half of the world’s population. This male default extends beyond the pictures we study in science class. It means that for more than a century, drugs have been primarily tested on men, their side-effects not well understood for women, who have different physical bodies and different hormones.”

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