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Why The Long Covid Advocacy Space Is So White

The United States has continued to struggle to create equitable outcomes in race, gender, and beyond since its founding. Partially because fixing these issues requires a complex set of actions, in which the scale and magnitude as these fixes are implemented requires constant analysis and readjustment over time. Additionally, it is because during the process of fixing these issues, we must bravely acknowledge mistakes in the past, create sustained effort of accountability, plus course correcting when efforts go awry. Failed efforts can unfortunately have long-lasting negative results. In the quest to educate and acknowledge the historic harm of communities of color in America, we must remain cognizant of the possibility that our efforts in amplifying these issues don't veer off into developing defeatist attitudes and further disenfranchisement.

It is easy to pin this historically, and persistently White woman-dominated space, as just being due to the false assertion in the past by researchers that post viral chronic illness is more prevalent in middle class White women. But there's layers to why this space continues to lack diversity, in both race and gender.

I lean on my experience in political campaigns to elevate my observations, but other sociological data points align with my key points.

According to the Top Priority Issues for 2022 Midterm Black Voters from HIT Strategies poll , the economy, abortion, racism and gun violence are the top issues of concern. Additionally, polling from midterms shows that nearly 40% of Black men don't believe their vote counts.

What can we gather from these voting polls that shine some insights on why the Long Covid patient advocacy space is so White? That economic issues, racism and personal safety are top issues within the Black community. As a Black woman this wasn't a surprise to me. But the level at which, Black men feel as if their voice has no value in society did. However this makes sense, because if you don't believe your vote counts, why would you believe your voice counts in anything else including healthcare.

Name a Black man in the space whose professional background doesn't pre-qualify him to speak about Long Covid. Now think about the lengthy list of previously average White women in the space who are more prominent. Take all the time you need to sit with this.

A group of middle class white women sitting in chairs in a circle.

Historically, Latino communities track similarly in these types of polls on key important issues. The decades-long quest of a certain segment of our society to disenfranchise people of color concerning voting, has been surprisingly, yet unsurprisingly more successful when it comes to men. That concerted effort to discourage voting of people of color may have had an unintended effect on participation in patient advocacy as a whole, especially in the very politically charged Covid space.

Time is money and Black and Brown communities have always been at the lowest levels of wealth in America. However, only the financially privileged can have a sustained presence in advocacy. Our lag in diagnosis of chronic illness is a factor that is fueled partly from lack of wealth, but also advocacy pays little to nothing for our time and talents. The time invested in advocacy is often taking away from the time we could be spending filling the gaps of basic care, such as looking for a quality specialist.

Furthermore, long Covid advocacy is uniquely involved in meetings with government agencies and members of Congress and also working within the systems of healthcare and research. This level of patient involvement hasn't been seen since the AIDS epidemic.

Unfortunately, healthcare systems and their policies have had fresh harm to people of color historically and continue to harm us present day.

It may seem as if it is easy for us people of color in the space to speak about the harm we experience from systemic racism. However, just because our communities are familiar with experiencing the trauma of racism, it does not make it any less hurtful to recount. It is also a very delicate tightrope to walk, in discussing the harsh reality of the impact of systemic racism, while at the same time working with decision-makers to curate comprehensive solutions.

Respectability politics and tone policing people of color, even in "progressive" spaces add to this difficulty.

Historically, being visible in any part of any system in America is a danger to people of color. Regardless of our intentions for good, we regularly witness people of color who are victims, get their entire life history scrutinized with a fine-tooth comb in an effort to invalidate and discredit their words. ( We saw this in the Eric Garner case). In our effort to help we often become the villain or end up incarcerated soon after we speak about hot topics that highlight disparity.

Any person of color less than perfect is at risk of losing everything including their life for having the audacity to critique any system in America.

Even if advocates of color somehow stay under the radar of being criminalized or our character assassinated, the harassment online from racists can be overwhelming. Especially for those who are active content creators. Triggered racists often target Black and Brown content creators to get their accounts deleted, as many platforms will deem our educational content around racism as against their policy, yet not bullying from bigots. People of color all know this, though data lags in confirming this community held belief. Hence why there also remains a disparate representation of Black and Brown people in the advocacy space even among the rise of bold politically active women in America.

Additionally, our society continues to push a very negative perspective of legislation. Especially in terms of federal legislation harming people of color. While that is true historically, there is an imbalance. Very rarely is there mention of federal legislation that helps protect people of color, or betters our life. Though it exists.Such as the Affordable Care Act , The Civil Rights Act and The Emmett Till Unsolved Civil Rights Crime Act. There is so much talk the last few years about the 93 Crime bill being the catalyst to mass incarceration, yet most spaces don't acknowledge that the 93 Crime bill is what gives the DOJ power to investigate nationally renowned escalation of force cases. Many spaces also fail to acknowledge that the bill has landmark protection of women and children in it. Black and Brown spaces are just as guilty as “ progressive” majority White spaces when it comes to highlighting helpful legislation. There's a thin line between realistic education and contributing to disenfranchisement.

5 key actions White allies can make to catalyst racial equity in patient advocacy.

  1. Approach people of color with the understanding that our participation in advocacy is a financial and mental sacrifice. Make this burden as low as possible, however you can. If possible, connect us to resources.

  2. Be sure to be honest when inviting people of color to participate in advocacy in public ways, such as media interviews, of the potential negative outcomes.

  3. Be vocal about where you stand on racism. Don't make us have to guess. Make bold, clear public statements about where you stand on bigotry.

  4. Avoid tokenism. One person of color as a panelist or board member doesn't make a space diverse. If you do consistent work to make a space authentically welcoming to people of color, it will be easier over time to curate more diverse events. It is also not the responsibility of people of color to point out bare minimal representation.

  5. Proactively protect people of color from online trolls, including strangers. It is a huge morale boost to see our space and feelings safeguarded. The less we feel as if we are in this battle alone, the more emotional bandwidth we have to do things such as recounting traumatic medical racism we experience to hundreds of strangers.


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