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Support community-based research.
Research about issues hurting marginalized communities has skyrocketed. However, this has not decreased inequality. Extractive research studies marginalized communities without involving or helping them. It runs rampant in American research institutions.
Good morning and welcome back! As society reckons with racial inequities, resources are flowing to conduct research studies to implement new policies and practices. Sometimes, these practices can do more harm than good – exploiting marginalized communities and gatekeeping access to direct support. Tiffany shares more in today's newsletter.
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– Nicole
TAKE ACTION
Support community-based research projects such as the Anti-Eviction Mapping Project and organizations that use community-based research like the Coalition on Homelessness, Our Data Bodies, Causa Justa, and Dignity and Power Now.
Whether you’re a student, parent, employee, or neighbor, challenge academic institutions to employ community-based research.
When assessing academic “solutions” to problems in oppressed communities, consider: Were those being studied involved in research design, implementation, and analysis? Will they be empowered or further marginalized by the proposals? Were community members already articulating their problems, needs, and desires? Did problems stem from a lack of research or an imbalance of power and resources?
GET EDUCATED
By Tiffany Onyejiaka (she/her)
Research about issues hurting marginalized communities has skyrocketed. However, this has not decreased inequality. Extractive research studies marginalized communities without involving or helping them. It runs rampant in American research institutions.
Researchers in the U.S. have long exploited marginalized communities. Colonial doctors experimented on enslaved Africans (JSTOR). Medical researchers used Puerto Rican women as guinea pigs for the first birth control trials, murdering some in the process (History). Some still deny racism by citing Daniel Moynihan, a sociologist, and Harvard professor, who believed the rise of single-mother households fundamentally caused Black poverty (The Atlantic).
Exploitative research extracts knowledge from oppressed communities without providing empowerment and resources. It views marginalized communities as objects to be studied and academics as the ones who establish the truth and decide the right solutions.
Many researchers do not come from or live in the communities they study. A 2011 NIH study revealed that of the principal investigators awarded R01 grant funding for research, 1.2% reported as Black, 3.4% reported as Latino, and less than 0.2% reported as Native (NIH). Only 11% of students from low-income families obtain a bachelor's degree, so very few researchers come from low-income communities (Ed Trust).
Health studies pinpointing health disparities without focus on solutions is a rising issue. “The inordinate focus on identifying rather than eliminating disparities in health sciences research comes from the top, from what research questions receive NIH [National Institutes of Health] funding and which researchers’ careers are supported,” Dr. Rhea Boyd M.D, a pediatrician and public health advocate, told Anti-Racism Daily.
Aminata Kouyate, a medical student at UCSF, stated, “My professor calls it the Health Disparities Industrial Complex. People are really out here making whole careers reporting on us dying but doing nothing to change that” (Twitter).
Community members are rarely involved in the design or execution of research projects. Many do not see study results because most academic research gets published in journals with subscriptions costing hundreds to thousands of dollars (Vox).
“When researchers do not share the findings with the community who provided the data or samples, they disable the community from making important interventions and from benefitting more generally from the evidence that results from their contributions,” Boyd explained.
Some research focuses on identifying issues that marginalized communities have discussed for years. When the biggest benefit to said communities would be sharing resources and skillsets to find and implement solutions.
In 2019, tech billionaire Marc Benioff donated $30 million to research houselessness (CNN). Houselessness isn’t exactly a new problem. Unhoused communities and advocates have expressed for years that escalating housing prices drive much of the crisis in the Bay Area (48 Hills, Teen Vogue). In 2019, SF had an estimated 8,035 unhoused people and 38,651 empty home units - when the median monthly income for a one-bedroom was $3,690.(CBS Bay Area, SF, SF). That multi-million dollar gift could have housed every SF unhoused person for one year. Engaging with community organizations would have likely shown that the best help would have been to provide a direct housing benefit to the folks sleeping on the streets and in their cars.
San Francisco’s Coalition on Homelessness produced a report called “Stop the Revolving Door” which offers recommendations on how to address houselnessness. This report was produced using a methodology called Community-Based Participatory Action Research, which means community members – in this case, unhoused people in San Francisco – were involved in every step of the process from designing the survey to working as researchers. They created the most comprehensive report on houselessness ever conducted in the city (Coalition on Homelessness). While working on community-based research, the Coalition organizes alongside unhoused people on community priorities like housing subsidies and limiting police power to actively help fight against houselessness (Coalition on Homelessness).
Why do so many respected institutions still do predatory research? It has rewards. Academics and students build resumes and advance careers. Universities get grants. Charitable foundations can celebrate their “impact.” Rich donors get recognized as generous philanthropists. Everyone wins - except the folks from disadvantaged communities that remain afflicted.
Research can only help uplift disempowered people if researchers include community members as active subjects and engage them from a place of genuine respect and concern. Community-based research has to become the standard.
“Rather than a one-way process where researchers take data and stories out of the community to serve their own career interests, researchers should partner with communities to ask and answer questions that are of interest and benefit to communities members - remembering to return with the findings so the community can also start to elaborate their own solutions or implement their own interventions, based on the findings,” Boyd added.
Researchers should aim to genuinely want to improve lives, not simply get publications. Academia must grow humility along with its body of work.
Key Takeaways
A lot of research on high-risk communities is extractive instead of actively helping or uplifting these communities.
Many members of disadvantaged communities are not included in the research design, do not have access to research publications, and often do not get benefits from their participation.
Most researchers do not come from or have strong ties to the marginalized communities they study.
Community-based research models engage community members the most and help to empower their communities instead.
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Rally for representation in science and research: COVID-19 and CDC.
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Happy Sunday, and welcome to another conversation on race and COVID-19. This week we look at how representation internally can influence how companies respond to external challenges.
Two weeks ago, we highlighted the impact of COVID-19 on the Navajo nation and linked to a mutual aid fundraiser to support in the Bodaway / Gap area. Within 48 hours of that email, the fundraiser raised $15,000 thanks to 462 donors, helping the community reach its initial goal! Thank you to all that support – and remember, your contributions to anti-racism efforts may feel small, but ladder up to comprehensive change when we all do it together.
We're looking for voices interested in supporting upcoming stories: racism against Asian Americans during COVID-19, racism on college campuses, and perspectives from those that identify as white-passing and/or mixed race. Share your story on our submissions page.
If you haven't already, consider supporting this work with a one-time or monthly contribution. You can give via our website, PayPal or Venmo (@nicoleacardoza), or give $5/month on Patreon.
Nicole
TAKE ACTION
1. Explore the racial disparities of COVID-19 using the data from the NYTimes. U.S. residents only.
2. Reflect on your workplace and consider the following:
How would your work change if you had a more diverse staff?
What voices are missing from the team you're a part of?
What implicit biases might you harbor in your work? How would representation on your team help to counter them?
GET EDUCATED
We've already discussed how few insights on the racial disparities of COVID-19 prevented local government officials and communities from taking equitable action to protect people of color. But the conversation on representation by the CDC is also happening internally at their offices. Last week, over 1,200 employees at the Centers for Disease Control and Prevention signed a letter calling for the federal agency to address "ongoing and recurring acts of racism and discrimination" (NPR).
The letter outlines how employees perceive the CDC's lackluster efforts to hire, retain, and elevate Black and other people of color at the organization. At the time, Black employees represent only 10% of senior leadership. Hundreds of Equal Employment Opportunity complaints have been filed by Black employees over the years, many are still unresolved, and other qualitative stories demonstrate an "old boy/girl network" of racial microaggressions and discouraging Black staff to move up the ranks (NPR).
Demands for action within major companies are happening everywhere these days, spurred by the momentum of the protests. And the conversations are trending in the fields of science and research. The #BlackintheIvory hashtag on Twitter, sparked by Shardé Davis and Joy Melody Woods, documents the experiences of Black people being discriminated against in academia (Twitter). By early June, more than 5,750 accounts on Twitter had used the hashtag to discuss their experiences working in the ‘ivory tower,' a metaphor used to describe academia’s disproportionately white elite institutions. Others were sparked to #Strike4BlackLives and #ShutDownSTEM on June 10th by taking a day off to honor the contributions Black academics (Nature).
These actions are important as we analyze the role major institutions play in upholding systemic racism, the same inquiry that prompted our Sunday series on COVID-19 (so meta). As we watch our country struggle with another wave of COVID-19, many officials are quick to blame the actions of individuals. And certainly, we need to hold all of us more accountable for wearing masks and practicing safe social distancing habits. But the narrow focus on people may distract from the institutional harm that perpetuates the disproportionate impact of COVID-19, articulated brilliantly over at The Verge.
But the calls for equity at the CDC are particularly timely because of its influence on the narrative of the disproportionate impact of COVID-19. The CDC was slow to capture and report data on COVID-19 across racial groups. Congress required the organization to send its first report on the subject in May, but it was only four pages long, much of it copied and pasted from existing resources on the CDC website (read the full criticism from U.S. Senator Patty Murray). A follow-up report from June was also considered woefully inadequate for the issues at hand (NPR).
Two weeks ago, conversations about the racial disparities of COVID-19 surged again when the NYTimes published the most comprehensive set of federal data on the pandemic. These insights, which represent data from 1.5 million COVID-19 patients, paint a more dire picture than we knew previously: that Latino and African American residents of the United States are 3x as likely to become infected as their white neighbors, and nearly twice as likely to die (NYTimes). It offers breakdowns in cities and states, urban v. rural living, and other identifying data to further illustrate disparities locally. It's important to note that this NYTimes report does not cover conversations on all racial identities equitably.
It would be one thing if the CDC published this data, but that's not the case. In fact, the NYTimes sued the CDC to release this data (NYTimes). Specifically, the NYTimes filed a Freedom of Information Act, or FOIA lawsuit, a complicated legal process of going to court to challenge the government’s refusal to release materials that the public should see. (You can read more about the process on the NYTimes, and the history of the FOIA law itself on Yale Law).
It's unclear to me why this data, which only represents cases through the end of May, wasn't released in full sooner. But even the data set itself is incomplete; hundreds of thousands of cases – 48% of cases and 9% of deaths – are still missing racial, ethnic, and geographical details (NYTimes). Although this data can be used to more accurately inform local leaders and guide a more equitable form of response, it's still missing more accuracy that can help prepare us as we descend into a second wave of outbreaks.
The authors of the CDC letter put it simply: the lack of acknowledgment about the racial disparities internally at the CDC affect how the agency has responded to health issues externally. By stifling voices of Black leaders, it's minimized their calls to address racism as a public health crisis. And by failing to hire diverse staff, it misses the perspectives they can bring on health crises in their own communities (NPR). It's a pressing and urgent example of how important it is for institutions and workplaces – whether in health, science, academic, journalism, or elsewhere – to truly reflect the diversity of the communities they aim to serve.
“Failing to address racism as a fundamental cause of health disparities is a key reason why we have witnessed little progress in reducing many of these disparities in the United States over the past 50 years”.
CDC Employee Letter to Address Workplace Racism and Discrimination, via NPR
The letter, which you can read in full here, calls for the CDC to make sweeping changes internally, including actions like diversifying senior leadership, addressing racism in the CDC's culture, expand internship and fellowship opportunities to students at historically Black colleges and universities, and adopt mandatory implicit bias training. In addition, it urges the CDC to publicly declare racism as a public health crisis in the U.S., a stance that dozens of cities and at least three states (Michigan, Ohio, and Wisconsin) have taken to fuel political and social changes to close the wellbeing gap (Pew Trust).
KEY TAKEAWAYS
The CDC has been challenged for how it's reported on the racial disparities of COVID-19
The CDC has also been challenged for racial aggressions and discrimination internally in a open letter signed by over 1,200 employees
The NYTimes sued the CDC to release a comprehensive dataset on the racial disparities of COVID-19
Lack of representation internally can affect how institutions operate externally
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