Left Behind: Waiting for a vaccine, as a disabled college student

As the pandemic has gone on, I have watched my quality of life steadily deteriorate. As a Black Disabled woman who lives with many chronic health conditions, including fibromyalgia and PTSD, I live each day in some degree of pain. My conditions can be exacerbated by stress, but before the pandemic I had regular access to health care, so it was manageable.

For now, I live my life in the four walls of my dorm room at the University of California, San Diego. Because of various lifestyle changes due to the pandemic, my weight has increased to the point that I am now considered by the CDC to be at higher risk of COVID-19 complications. I’ve also been newly diagnosed with ADHD, and have yet to receive treatment. I find myself forgetting to wash my hands and not touch my face. I am not alone in this: a 2020 study out of Israel found that the COVID-19 infection rate was nearly 50% higher for individuals with unmedicated ADHD.

In a few months, I’ll have completed a full year of online courses towards my undergraduate degree. Online life carries its own perils: I was the victim of a racist Zoom bombing after the killing of George Floyd and soon after was named the Underrepresented Student Officer for the University of California Student Association. Taking on this role has given me a platform within the University of California system to advocate for the needs of disabled students for vaccine equity.  

Some of the other learning challenges I’ve faced have taken me by surprise. Instructors have questioned my academic honesty because I need to work asynchronously with my group instead of in a breakout room during the course time. Instructors of my calculus course denied my request to reschedule a quiz, which eventually required an intervention from the Office of Students with Disabilities to create a workable solution for me. Delays in my pain management injections have increased my pain and decreased my focus, on top of my untreated ADHD.

With all the complications this pandemic has brought to my life, being shut out of the state’s original age-based vaccine distribution plan came as a blow. While the state is expanding vaccine eligibility on March 15 to younger people with disabilities and certain chronic conditions, I may still not be eligible. I am identified as higher risk of COVID-19 complications by the CDC due to obesity but not by the state of California, which only includes severe obesity.

The CDC states that “conditions are added when there is enough scientific evidence to support putting them on the list,” so we have to accept that this is an evolving situation. But what if that is too late for some of the high-risk disabled students, like myself, whose conditions are excluded in the distribution strategy? 

Within the University of California system, I’ve noticed that each campus has taken a different strategy towards protecting its students during the pandemic. UC San Diego’s Ready to Learn program has successfully been able to keep thousands of students safe on campus by taking steps such as testing students for COVID-19 every week and using the CA Notify mobile app to let individuals know if they’ve come into contact with some who’s tested positive for the virus. Campuses like UC Berkeley, however, have experienced huge outbreaks, particularly endangering high-risk disabled students, including friends of mine.

During the pandemic, I have also begun to serve as communication student co-chair for the American Public Health Association Disability Section and I co-founded the social media movement Disabled In Higher Ed. Through these roles, I have seen firsthand the inequities disabled students are facing during the pandemic. For instance, disabled students who are blind depend on screen readers, which allow visual information –including social media websites like Twitter — to be conveyed verbally from their computer. Since many health officials, politicians and agencies use Twitter to convey key health information during the pandemic, this access is crucial. Many tweets from county health departments, the NIH and the CDC refer to graphs or infographics. Yet without alt text, the screen reader just says “image,” because these government agencies often do not include alternative text to orient blind people.

These experiences during the pandemic have shown me how much work we have to do if we want disability to be respected. This pandemic could be a turning point in the way we see disability in the future. How are we going to take lessons from this ordeal to create a new and better normal?