Access Underscores Ugly Truths About Racism and Ableism
I read the email over and over and over, checking and rechecking it to make sure it was meant for me. Eventually, I called the number and scheduled an appointment for my first dose of the Pfizer COVID-19 vaccine. Any doubts I had about receiving the vaccine had disappeared the moment I received the notification. Getting vaccinated didn’t just represent a chance to begin attending concerts, grabbing dinners with friends, or returning to something closer to normalcy. Instead, as a Black Latina physician, it meant that I could help protect my patients and my community. As a high-risk disabled woman, it meant that I finally had the chance to protect myself. The fact that these vaccines have been developed and administered to millions so quickly is a testament to advancements in medical technology and public health campaigns. But the fact that I had access to the vaccine in December 2020, that I am now fully vaccinated when so many Black, Brown, and disabled people like me aren’t, highlights just how far these systems have to go when it comes to health equity and justice.
The pandemic revealed some particularly ugly truths about the U.S. healthcare system. During the spring of 2020, we were inundated with messages about how we were “all in this together,” which conflicted with messaging at the time that severe COVID primarily affected older and disabled people. That sentiment—combined with the racist rhetoric and misinformation that our nation’s leaders used to minimize the threat of the disease and actual data on cases and deaths—showed how uninformed we were about the threat we were facing. COVID hit Black, Latine, and Indigenous communities hard. We’re more likely to be exposed to the virus, less likely to receive appropriate care for it, and more likely to die from it. Public health and healthcare institutions had opportunities to address some of these disparities when the vaccine was introduced by involving marginalized groups in the development of communications campaigns and by prioritizing access in the most vulnerable communities. However, vaccination rates aren’t as high as they could be in communities of color for several reasons: It’s harder to get access to the vaccine in many of these communities and people of color are more likely to distrust the vaccine and government-administered healthcare. That distrust and hesitancy is warranted.
From the Tuskegee Study and forced sterilizations to J. Marion Sims’s callous experiments on enslaved women, the history of medicine in the United States is rife with atrocities committed against people of color. More recent stories of mistreatment by healthcare providers show that racism, ableism, and discrimination in medicine are ongoing problems. Medical racism—along with diversity, equity, and inclusion (DEI) in academic medicine—were hot topics in the summer of 2020, when the twin pandemics of COVID and police violence brought racism and its effects on health to the forefront. The Association of American Medical Colleges, Accreditation Council for Graduate Medical Education, and countless medical schools and hospitals released statements denouncing racism, created DEI strategies, formed anti-racism book clubs, and announced plans for a host of other DEI programs aimed at addressing the structural inequities in their institutions. The promises to hire and listen to Black and Brown people and address discrimination rang hollow, partly because of the ongoing disparities in COVID careand vaccine access.
My experiences with medical racism and ableism have influenced me both professionally and personally, including my relationship with COVID and the vaccine. I found a mass in my neck when I was in medical school. After five years of doctor’s appointments and being reassured, disbelieved, or outright dismissed, I was finally diagnosed with cancer. I had surgeries to remove the mass but, unfortunately, had a stroke after one of those procedures. It has been years since my diagnosis and years since I woke up in an ICU connected to a ventilator, the left side of my body completely paralyzed. I’ve reached the point where I can pass for “healthy.” Still, my illness left me with a variety of disabilities and a lot of uncertainty about my body and how it will respond to illness. During the early days of the pandemic, I spent hours watching the news or reading case reports. My anxiety grew as colleagues shared stories about new and horrifying symptoms. I checked in with my doctors, some of whom reassured me that I’d be okay if I quarantined, but none of them were able to answer questions about my level of risk.
I did as I was told: I stayed home as much as I could and wore a mask whenever I couldn’t. I watched the cases rise and restrictions relax at the same time. I watched legislators, commentators, and laypeople alike blame thousands of people of color for their own deaths. They didn’t discuss disability unless they were talking about rationing resources. They didn’t address race unless they were talking about preexisting conditions, obesity, diabetes, poor hygiene, and “personal responsibility. I watched the reports, felt my heart pound, felt the numbness of my arm, and flashed back to my bed in the ICU. Eventually, I turned off the television, but I kept up with the news about vaccine trials while discussing the virus and vaccination with family and friends. My white physician colleagues talked about immunizations as if they were miracles and highlighted the science. They knew the difference vaccines could make, as I did, but they had complete faith in our healthcare system and I did not.
I knew the science, understood the possibilities, listened to healthcare leaders promise to help hard-hit communities and I tried to believe them. My Black and Brown colleagues talked about their concerns and their fatigue, about how it felt to care for and lose patient after patient who looked like your cousin, your best friend, your auntie. To turn on the television and see the death rate rising, to switch to social media and see anti-masker belligerence, videos of police killings, violence, and brutality on autoplay. We felt conflicted—we were staunch supporters of vaccination but had concerns about the healthcare system, knowing that it failed people of color, sharing that it failed us too. I had different kinds of conversations with my family. My cousins expressed their doubts, shared stories about doctors who mistreated them, articles about Black people who tried to get help and couldn’t, and links to funerals held on Zoom. They told me they didn’t know what to believe. I told them to quarantine. All of this ran through my mind as I read the scheduling email.
If our leaders in medicine and public health mean what they say and want to decrease healthcare disparities and improve outcomes for people of color, they have to start with the basics.
My thoughts wandered back to the ICU, to my hospital bed. I never want to go back. I made up my mind in an instant. At the same time, I felt as if I was getting away with something. I didn’t qualify to get the vaccine because of my finicky airway, my weakened arm, or the cancer that has long been in remission. Nor did I qualify because of the outbreaks that were ravaging my town. I was in the first group to receive the vaccine because I was a physician. I didn’t work on a COVID unit, only saw patients in person for a few hours a week. But I felt like I didn’t deserve the vaccine, like I had taken something from people sicker or more vulnerable than me. I’m privileged in ways that other disabled people of color aren’t. I have the internet required to access the vaccine appointments, a car to get me to a clinic 20 miles away, a flexible schedule, support from my employer, consistent healthcare, and outstanding insurance. All of this on top of access to information about the virus and the vaccine.
If our leaders in medicine and public health mean what they say and want to decrease healthcare disparities and improve outcomes for people of color, they have to start with the basics. Acknowledge the harm that the healthcare system has done and that it continues to do to us. Take concrete steps to address medical racism, ableism, and discrimination. Recognize that health doesn’t start and end in the hospital or clinic; that access to housing, transportation, employment, education, food, and other factors impact health too; and that racism and ableism and discrimination affects health too. If they’re serious about improving access to the vaccine, then they must address access from a holistic perspective and treat people of color—disabled or abled—as if they deserve that access and that respect.
As of May 2021, every person over the age of 12 in the United States is eligible to get the vaccine. I got both of my shots, posted selfies on social media, and saw other disabled people do the same. I continued to wear my mask and to quarantine despite the loosening restrictions and ever changing guidelines of the spring and early summer. I started watching the news again as the Delta Variant started to spread and case rates again began to rise. I encourage my patients to wear masks and to get vaccinated, especially given how contagious and deadly this new variant is, and I do the same for my family and friends. Despite everything, I hold out hope that our healthcare system will learn something from all of this and start prioritizing the needs of the most marginalized. And that Black, Brown, and disabled people will finally get the kind of healthcare that we deserve.
