By Kaye Olsson, I Start Wondering Columnist
We’ve all experienced it—standing in a long line for the women’s bathroom at a public venue while they wait for the men’s room is nonexistent. Trying to use the fitness app on a smartphone that is too large to fit in our pocket (if our clothes are even equipped with a pocket at all). Or grasping for something on the top shelf of a grocery store that was clearly designed for a much taller person. It matters that the vast majority of (usually male) architects, engineers, construction workers, and legislators are not affected by these problems.
Welcome to being a woman in a man’s world.
A quote attributed to Simone de Beauvoir states, “Representation of the world, like the world itself, is the work of men; they describe it from their own point of view, which they confuse with the absolute truth.” In other words, the male vantage point is often the only one taken into account when making decisions such as bathroom design, smartphone size, or shelving height.
Missing Information
In her book Invisible Women: Data Bias in a World Designed for Men*, Caroline Criado Perez explains that failing to include the perspective of women is a huge driver of an unintentional male bias that attempts (often in good faith) to pass itself off as “gender neutral.” She attributes this problem to a lack of balanced data that includes both male and female information—a situation she calls a “gender data gap.”
In fact, Perez notes that much of recorded human history is one big gender data gap. Starting with the theory of “Man the Hunter,” early historians devoted little space to describing women’s roles in the evolution of humanity. Instead, by default, the lives of men were taken to represent those of humans overall. When it comes to the perspective of the female half of the population, there is often nothing but silence. And this silence is everywhere—movies, literature, science, city planning, and economic policies.
Gender data gaps have real consequences that impact women’s everyday lives. Shivering in offices set to a male temperature norm, for example, or struggling to sit on furniture set at a male height norm. Are these situations annoying? Yes. But are they life-threatening? No. Not like crashing in a car with safety specifications that don’t account for women’s measurements. Or having a heart attack go undiagnosed because the symptoms are deemed “atypical.”
Gender-Biased Healthcare
Women pay tremendous costs for living in a world built around male data, which can sometimes be deadly—especially regarding healthcare. From chronic pain to emergency room visits, women’s medical concerns are often dismissed at higher rates than those of men. One study showed that middle-aged women with chest pain were twice as likely to be diagnosed with a mental illness (and prescribed antidepressants) when compared to their male counterparts. Another study found that women and people of color who visited emergency rooms waited longer to be seen by a doctor.
Even medical technology seems to favor men. The newest artificial hearts are designed to save 86% of male patients, but only 20% of female patients—despite the fact that heart disease is currently the number one killer of women in the United States.
Corrupted Data
Why is this happening? One explanation is that our world is increasingly reliant on data, which, in turn, are mined for truth by computer-generated algorithms. But these algorithms are only as good as the underlying information they are structured on. When the data are corrupted by gender-related gaps, the resulting truths are only half-truths at best. And often, for women, they aren’t true at all. This is unacceptable—especially when the algorithms are used for making decisions that could have life-or-death consequences.
Research data are skewed because clinical trials typically have a lower percentage of female participants, even when the studies are targeting conditions most likely to affect women. For example in her article, The Mismeasure of Woman, Carol Tavris, Ph.D., cited a research study on the effects of drugs on breast cancer in which the only test subjects were men. The National Institutes of Health did not even pass regulations requiring the inclusion of women in federally funded research, or results disaggregated by sex, until 2016. Since then, the policy has not been uniformly enforced; therefore, pronounced gender data gaps still persist.
Less than half of all widely available prescription drugs (such as Valium) have been tested on female subjects, yet women make up 80% of the patients who receive these prescriptions. Without scientific data, the outcome of most drugs on women is simply unknown. "Medical research that is either sex- or gender-neutral or skewed to male physiology," wrote the researchers of a study of disparities in medicine, "puts women at risk for missed opportunities for prevention, incorrect diagnoses, misinformed treatments, sickness, and even death."
Doctors are trained in medical school with the male body as the norm, even though women have different physiology and disease symptoms. Specific instruction on women’s health is rarely part of the standard curriculum. Therefore, it is no surprise that female diseases, such as endometriosis or uterine fibroids, are often misdiagnosed. In her book The Pain Gap: How Sexism and Racism in Healthcare Kill Women*, Anushay Hossain explains that doctors often don’t believe women's pain and traditional tests (designed for male bodies) don’t pick up their symptoms.
Becoming Our Own Advocates
It is easy to feel disheartened. So, as women, what can we do to improve this situation?
Be Aware. The first step to dealing with the data gap and gender bias in healthcare is to take it seriously and increase our awareness. Ask questions about potential side effects, symptoms, and alternatives to prescriptions or medical treatments. Learn about their impacts on female bodies before blindly following a doctor’s suggestion.
Speak Up. Healthcare is a team effort and it’s important to remember that the expert on the team is YOU, not the doctors. No one knows your body better than you do, so be your own advocate and refuse to accept a one-size-fits-all approach that is not working for you. Don’t downplay your symptoms. Be honest and specific about your level of discomfort. Be persistent and push for an accurate diagnosis and/or treatment.
Make a Change. If you are unhappy with the medical service you are receiving, don’t be afraid to change providers. Long gone are the days when past generations of women accepted a doctor’s advice as gospel. Physicians are human, just like the rest of us, and are not immune to making mistakes.
Participate in the Larger Conversation. When designing a world that is meant to work for everyone, we need women in the room. If the people making decisions that affect all of us are only white men, the results will always be incomplete. Volunteer for clinical trials. Seek leadership positions. Advocate for women’s health research and funding. It’s the most empowering change we can make.
Let’s do whatever it takes to get our voices heard. Only then will we begin to address the gender data gap in healthcare and other important areas. It could truly be a matter of life or death.
*Proceeds from the purchase of these books will be used to support I Start Wondering's programming for women who have reached mid-life and beyond.
Thank you, Kaye, for offering this very important and very sobering column. You really underscore why it's so important for all women--but especially older women--to be our own advocate in relation to making healthcare decisions. It's really, really important to tune into and listen to our own inner guidance to make the choices that will best support our long-term health. Again, thank you!