Recap: Long COVID webinar
An Overview of the May 2025 Understanding Ableism Webinar: “Long COVID’s Impact on the Disability Community”
By Colin Wilfrid, AmeriCorps KCDC Coordinator
(Watch the webinar here on our YouTube channel.)
AmeriCorps KCDC Coordinator’s note: Unlike the previous 2025 webinars, this webinar was not hosted by me, but instead by my colleague, Mariel Woodley. In Late April, the federal government pulled funding from my AmeriCorps program, forcing me to stop hosting Understanding Ableism webinars until further notice. Since the Long COVID webinar was recorded, a judge ruled that all state-administered AmeriCorps members needed to be reinstated, and as a result, I have returned to my duties as AmeriCorps KCDC Coordinator at Disability Empowerment Center.
The fourth webinar in our 2025 series, which took place on May 20, centered around what Long COVID is, how it impacts the disability community and what can be done to help people on their journey to recover from Long COVID. This webinar had three panelists, all of whom have firsthand experience with the impact that Long COVID has on people with disabilities.
Dr. Zeest Khan is a physician from Northern California who was on the frontlines, taking care of people sick with COVID-19 when the pandemic began in the Spring of 2020. It did not take long for the disease to spread to Dr. Khan, and her symptoms lasted for the rest of 2020 and into 2021. Specifically, Dr. Khan had a hard time walking in late 2020, and by early 2021 she could not walk even short distances. Eventually, Dr. Khan was diagnosed with Long COVID, and she took medical leave due to her health problems. She opted to not return to her physician duties and instead create her own website, a Substack account and a podcast all dedicated to gathering more information about Long COVID. Her goal is to remedy a lack of scientific research on this subject.
Cynthia Coffin is a Program Coordinator at Disability Empowerment Center. In 2022, she picked up COVID-19 from the National Federation of the Blind Convention. With her symptoms lasting for more than two weeks, Cynthia had to advocate for her doctor to send her to the Long COVID unit. When she finally arrived at the Long COVID unit, Cynthia was still not given a diagnosis and was instead referred to specialists. While she did not get the help she wishes she had gotten at the Long COVID unit, Cynthia was granted accommodations for her college classes to account for her new health issues. As a result, she graduated after initially thinking she would have to take her graduation year off due to her health issues.
Vicky Navarro is a Community Navigator for Public Health - Seattle/King County as well as a provider for King County Promotores Network, an agency that provides social services for non-English speaking King County residents. In her work, Vicky has had multiple clients who have experienced Long COVID. With both data on Long COVID and service providers who speak other languages being scarce, Vicky’s clients depend on her to listen to them with empathy and advocate on their behalf to public health and government officials who are only fluent in English. Since it is Vicky’s job to help people who use English as a Second Language find critical resources, she was motivated to learn more about Long COVID and be an ally to people with Long COVID who are not fluent in English.
One practice that all three panelists advocated for was for medical workers, researchers and government officials to listen to people with lived experience of Long COVID and base how they address Long COVID on the lived experiences. Dr. Khan points out that many of the physicians that she has worked alongside still do not know very much about Long COVID and struggle in terms of helping Long COVID patients. As someone who has both medical expertise and lived Long COVID experience, Dr. Khan pointed out that Long COVID is like other, longer-running diseases where side effects can still happen despite no longer being infectious, so there might already be clues for Long COVID researchers. In going to the Long COVID unit and still not getting a diagnosis, Cynthia’s story shows how easy it is for doctors to get away with assuming they know what is best for their patients. Cynthia hoped that her doctors at the Long COVID unit would trust her as she honestly talked about her symptoms, but that did not happen because the doctor was trained to think they knew Cynthia’s experiences better than she did After noticing how others were dismissed by medical providers, similar to Cynthia’s experience, Vicky knew that she was the best bet in helping COVID Longhaulers who are not fluent in English find the best resources. This is why she actively helps her clients find the right Long COVID resources, while also teaching herself how she could better assist her COVID Longhauler clients.
Another common cause that Dr. Khan, Cynthia and Vicky advocated for was using community as a temporary solution to a lack of research. Dr. Khan knew the internet was going to be where many people looked for answers as to how their Long COVID could be treated. Therefore, she created her own website, newsletter, Substack and podcast for herself and other people with lived Long COVID experience to teach each other about what could possibly be done to increase knowledge about Long COVID and how to treat it. Through others interacting with her media platforms, Dr. Khan learned about Long COVID’s impact on the disability community. While even the Long COVID unit not giving her a diagnosis was disappointing for her, Cynthia still used her expertise as someone with lived experience to advocate for what she needed whenever she had the opportunity. For instance, she advocated for accommodations on all her subsequent college assignments based on the health issues she had since acquired. In informing others about what did and did not work for her, Cynthia was building community by helping others understand what it was like to experience Long COVID symptoms but not get a diagnosis regardless of how hard they tried. As for Vicky, it is her job to help people who aren’t fluent in English navigate the United States, a country where too many people in power neglect people who do not use English as their first language. By listening to their Long COVID stories and admitting she learned a lot from them, Vicky has earned the trust of her clients with Long COVID and was empowered to speak on behalf of them on this webinar.
There is a reason why most Americans’ COVID-19 precautions are currently few and far between compared to 2020 and 2021. People without disabilities have been able to access resources that can lessen the impact of their COVID-19 infections, while people with disabilities have generally not had as much luck. With systemic ableism still strong in this country, non-disabled people in power decided to withdraw COVID-19 precautions since they did not believe the disease was a problem anymore. As a result, they ignored the fact that Long COVID is much more common in people with disabilities than people without disabilities. There is hardly any Long COVID research for this same reason. However, by speaking on our Understanding Ableism webinar on May 20, Dr. Khan, Cynthia and Vicky have shown that they know both the disability community and COVID Longhaulers deserve better.
While we are currently in a time when understanding Long COVID and its impact on people with disabilities requires more thinking outside the box and less formal research, Dr. Khan, Cynthia and Vicky know that as long as we work together, this reality could someday change.
Links/resources:
Public Health - Seattle/King County
Promotores Network
Dr. Zeest Khan’s website, LongCovidMD.com