Jami Nakamura Lin Nicole Cardoza Jami Nakamura Lin Nicole Cardoza

Reject racial gaslighting.

It's Friday! And we're introducing a new term to the newsletter: racial gaslighting.

This plays a major part in the systemic medical violence we've unpacked over the past week. And it's playing out in politics. When people and systems minimize the pain and trauma that people of color experience, they shield themselves from accountability and allow that harm to continue. Jami offers some specific examples of how this plays out in various spaces, and particularly how it impacts women of color.

Tomorrow is Saturday, where we host our weekly Study Hall. Reply to this email with any questions or insights from the content we covered this past week and I'll do my best to get to them!

Thank you for all your support! You can give one-time on our website, PayPal or Venmo (@nicoleacardoza), or subscribe for $5/mo on our Patreon.

– Nicole

TAKE ACTION

  • Watch how you and your friends/colleagues respond to the experiences of people of color. Consider how they may be gaslighting based on their comments, and inform them on why their approach is harmful.

  • If you’re considering two sides to a story, make sure you think about the power dynamics between the parties (in race, gender, age, position, etc.)

  • Don’t support businesses or organizations that deny or undermine the experiences of people of color.

  • Consider how racial gaslighting may play a part of the rhetoric of the upcoming election.

GET EDUCATED

By Jami Nakamura Lin (she/her)

In March, Margot Gage Witvliet developed coronavirus symptoms after a trip to Europe. Four months later, many of those symptoms still remain, putting her in the camp of what are known as “long-haulers”--coronavirus patients whose symptoms persist for months, deviating from the typically understood trajectory of the illness (read more about her experience at The Conversation). The experience of long-haulers is finally receiving more attention, but for many sufferers, it’s too little, too late. 

“Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had COVID-19… This ‘medical gaslighting,’ whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color,” writes Ed Yong in his thorough examination of long-haulers, whose numbers could potentially be in the hundreds of thousands (The Atlantic).

Most of our popular understanding of the term gaslighting is within the context of abusive relationships, as that is the context of the term’s origin (BBC). Gaslighting is a psychological method of manipulation used to deny the victim’s experience and make them question their reality, judgment, and sanity (Britannica). The goal is to make the victim dependent on the deceiver. 

But gaslighting can also happen on a structural level. Instead of an individual abuser, the gaslighter is an abusive system denying the reality of entire groups and communities in order to perpetuate power imbalances. “Gaslighting is a structural phenomenon… It is a technique of violence that produces asymmetric harms for different populations,” writes Elena Ruiz, a professor of philosophy and American Indian and Indigenous Studies (PhilArchive). 

Women as a whole are often targets of gaslighting (read the American Sociological Review for how gaslighting relates to gender-based stereotypes and inequality), and articles warning women about gaslighting techniques abound. Less is said in popular media about racial gaslighting, which specifically refers to “the political, social, economic and cultural process that perpetuates and normalizes a white supremacist reality through pathologizing those who resist” (Politics, Groups, and Identities Journal). Racial gaslighting says: the system is not broken, you are broken. 

These are things that most readers versed in anti-racism work will already know (that the system blames people of color instead of itself), but looking at them as forms of gaslighting can help understand how such psychological manipulation is intertwined at the individual and structural levels. Interpersonal gaslighting (within relationships) is usually successful because of systemic gaslighting because the relationship is “rooted in social inequalities” (American Sociological Association). The framework can help us understand how white supremacy remains entrenched in our society. 

Such racial gaslighting appears in many different areas. An academic study on a police force in Hamilton, Ontario, found that the way the police explained away their ID and carding tactics was a form of gaslighting. In their media appearances, the police used “obfuscation techniques” (lies, misrepresentations) to undermine local people of color, who had been arguing that the police’s carding techniques were discriminatory. They used gaslighting to deny their own structural racism (SAGE Publishing). 

In the field of medicine, gaslighting happens when health professionals minimize, ignore, or disbelieve patients’ symptoms and experiences (Health). Examples of this include doctors blaming physical symptoms on mental illness without justification, or providers refusing to request follow-up tests because they don’t believe their patients. Medical gaslighting is especially pernicious because of the inherent power differential between doctors and their patients, even before adding in the intersections of gender and race. Doctors have been socialized to take female patients (NY Times) and patients of color less seriously, and medical professionals still hold many racial biases (National Institute of Health). While practitioners usually participate in medical gaslighting without meaning to harm their patients, individual intent doesn’t mitigate the systemic impact. Their disregard has dire health outcomes, as explained in our recent newsletters on Black maternal health and Black mental health. 

“Missteps and misunderstandings, even by well-seasoned medical professionals, are human, but medical gaslighting is not. Normal test results in patients with chronic pain, unexplained sensitivities to the world, or fatigue should provoke more investigation, rather than a weak handoff.”


Dr. Anne Maitland for Op Med

A 2016 study by patient safety experts suggests that medical error is the third-leading cause of death in America, resulting in over 250,000 deaths per year (Johns Hopkins). But medical error is not nearly as widely researched as other causes of deaths, and we don’t know how many deaths per year can be attributed to medical gaslighting.

What we do know is that medical gaslighting especially affects patients of color. One doctor described the stereotypes patients of color with myalgic encephalomyelitis (a mostly invisible illness with symptoms similar to those of COVID long-haulers) faced: Black and South Asian patients were suspected of faking their symptoms to avoid work, while East Asian patients’ symptoms were thought to be the result of working too much (ME Action). In other words, their actual medical conditions were dismissed and attributed instead to racist stereotypes.

 

Think about the words of Canadian policy expert Emily Riddle: “To be an Indigenous woman in this country is to intimately understand both interpersonal and systemic gaslighting… Any Indigenous woman who questions anyone who demeans her or a system that perpetuates violence against her is bound to be called difficult.” (The Globe and Mail). To effectively combat the effects of systemic gaslighting in our own thinking, we need to question not just what we believe, but who we believe.

Key Takeaways

  • A whistleblower filed a complaint against ICE for “medical neglect" at the detention camp she worked at, including mass hysterectomies without detainees' content

  • Forced sterilization was a state-sanctioned practice, often funded by the federal government, that disproportionately impacted women and women of color during the 19th century

  • Forced sterilizations procedures are sexist, xenophobic, racist, and ableist, and often homophobic

  • Unwanted sterilizations are still happening today

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Nicole Cardoza Nicole Cardoza Nicole Cardoza Nicole Cardoza

Understand representation in vaccine trials.

Happy Sunday!

Today marks our weekly review of the racial disparities of COVID-19. It's important to remember that this virus doesn't discriminate. But our systems do. And we're trying to respond swiftly to its catastrophic impact while reckoning with our deep history of oppression and harm. Today's topic – the fight for representation in vaccine trials – is a good example of this. As you read, consider how much our mistakes from the past affect our ability to respond equitably in the present – and its implications for the future.

Thank you all for your contributions. To support our work, you can give one-time on our website, PayPal or Venmo (@nicoleacardoza), or subscribe for $5/mo on our Patreon.

Nicole

TAKE ACTION

  • Support the Black Doctors COVID19 Consortium, which is building trust in their community by offering free COVID-19 testing in Philadelphia, New Jersey and New York

  • Respect the racial and historical context that may make people wary of a vaccine

  • Consider: how may your racial identity influence your perception of vaccine trials? What privilege(s) may have helped you build trust in the healthcare system?

GET EDUCATED

The U.S. is moving at an unprecedented pace to create a vaccine to respond to COVID-19. The Trump administration has dubbed these efforts “Operation Warp Speed,” with the hopes to deliver “initial doses of a safe and effective vaccine” by January 2021 — shortening the development time from years to months (NPR). More recently, Trump has hinted that a vaccine may be ready by the election (what a coincidence), which is highly unlikely. And part of that is because of a lack of representation in testing groups.

350,000 people have registered online for a coronavirus clinical trial, but only 10% are Black or Latino, according to Dr. Jim Kublin, executive director of operations for the Covid-19 Prevention Network (CNN). An additional 8% represent Indigenous communities. This isn’t nearly enough, considering over half the COVID-19 in the U.S. have been in the Black and Latino communities (CNN). And beyond that, 1.3% of reported cases are from Indigenous groups, despite only representing .7% of the population (CDC). 
 

In fact, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, expressed his desire to see non-white communities enrolled in coronavirus vaccine trials at levels at least double their percentages in the population, which would mean 66.4% of participants need to identify as "Black or African American, Latin, American Indian, and Alaskan Native” (CNN). Scientists, doctors, and advocates are urging both pharmaceutical companies and the government to increase their efforts to enroll a diverse group of volunteers.

As we discussed in last week’s newsletter, communities of color have a deep distrust of the U.S. health care system, and for good reason. 

📰 Read more about the history of medical violence against communities of color >

Also, the U.S. (and other parts of the world) have a long history of using people of color as trial subjects for vaccines. Thomas Jefferson tested what would become a successful smallpox vaccine on enslaved people before extending it to his family (Smithsonian). A British doctor serving as a plantation physician in rural Jamaica subjected enslaved people to trial tests without consent (Futurist).

As a result, people of color are historically underrepresented in clinical trials of new drugs, even when the treatment is aimed at an ailment that disproportionately affects them (ProPublica). Data from the FDA shows that Black people are the least likely to participate in drug trials – and that participation by people of color decreased between 2018 and 2019 (Outsourcing-Pharma).

“The absence of significant participation by Black patients creates not only a hole in the data, but can contribute to less effective treatments with little data on the impact on that specific population.”

Dr. Valerie Montgomery Rice, president and dean of the Morehouse School of Medicine, via Governing

One outreach effort includes reaching out to historically Black colleges and universities, encouraging students to participate in the trials, and engage medical staff and students in the process. Advocates believe this can grow trust in the community and encourage more Black people to join (NYTimes). Here’s an example of a letter from Xavier University. But this initiative, paired with efforts to increase testing across campuses, is garnering mixed feedback (Twitter).

📰 Read why it’s essential to have more representation of people of color in research >

Also, the  COVID-19 Prevention Network, a group created by the National Institute of Allergy and Infectious Diseases, created an advertising campaign urging Black and Latino people to get involved. The ads center the voices of essential workers, grandparents, food industry workers, and other groups within communities of color that have been disproportionately impacted by COVID-19 (NBC News).

📰 Read more about the impact of COVID-19 on essential workers, the elderly, and workers in the food industry.

And leaders from the communities are doing their part to build trust. A group of faith-based leaders has joined together to enhance trust and engagement with people of color (Newswise).  And the Navajo Nation has announced its participation in a Pfizer-BioNTech COVID-19 vaccine trial on a patient-volunteer basis (Indian Country Today).

“I would encourage people, but I know everybody won’t. It’s like ingrained in the mindset of Black people when you consider the syphilis injections. Black folks don’t want to be guinea pigs and we have been. Even in light of that, if the data is transparent, if the information makes sense, if the research is credible, then I think we can overcome that particular fear.”

Rev. Kenneth L. Samuel, senior pastor of Victory for the World Church in Stone Mountain, via Governing

Regardless of the accelerated timeline for finding a vaccine, there’s “no shortcut” to authentically engaging communities of color for trials, emphasizes Dr. Dominic Mack of Morehouse School of Medicine in Atlanta (NPR). It will take a long time to repair a history of discrimination and harm, but that work has to start now.

RELATED ISSUES

PLEDGE YOUR SUPPORT

Thank you for all your financial contributions! If you haven't already, consider making a monthly donation to this work. These funds will help me operationalize this work for greatest impact.

Subscribe on Patreon | Give one-time on PayPal | Venmo @nicoleacardoza

Read More