February 27, 2023
When the COVID-19 pandemic hit, workplace challenges arose for everyone, but rare disease patients such as myself were especially impacted. I am a scientist in the Lek lab at Yale School of Medicine who lives with a form of muscular dystrophy known as Facioscapulohumeral Muscular Dystrophy (FSHD). This disease has left me wheelchair-bound, with limited use of my arms for most functional tasks due to weakness, and reliant on a personal care attendant to help me in the mornings. As I was at risk for major complications from contracting COVID, I was essentially homebound for over a year until I received the vaccines, leaving me socially isolated and majorly impacted my ability to work in my lab. However, the pandemic has led to one major shift that has made the environment more accessible to be a scientist with a rare disease. That is the shift towards virtual interactions.
The most obvious change applies to attending scientific conferences, something that has always been a great challenge for me. Prior to the pandemic, if I wanted to attend a conference, the first thing I would need to do is find out if any of my family members are free to go with me during that time frame as I can no longer travel independently or stay in a hotel room on my own. Additionally, we would need to make sure that the bathroom at the venue was accessible for me as oftentimes, bathrooms are not compatible for a wheelchair even when they claim to be. There are additional challenges during the symposium. My disease has left me hearing impaired and thus it can be difficult to hear presentations depending on my location in the room. Moving about poster sessions is a challenge due to overcrowding and this makes it even more difficult to hear other attendees, affecting my ability to network.
Now, many conferences are virtual or hybrid, which has been a major advantage as someone with a disability. With the option to attend remotely, I no longer have to worry about travel logistics and whether the hotel, bathrooms, and venue will suit my accessibility needs. Furthermore, by watching the talks on my computer I can connect to audio by Bluetooth on my hearing aids, greatly enhancing my ability to listen. Additionally, recordings of the talks are posted after the sessions, allowing you to re-watch for information that might have been missed. Posters too are sometimes available in an online format so that they can be viewed easier and have the option to zoom in on figures.
Limitations still remain with these virtual formats. Networking can be a challenge when you are not all in the same place. That also limits your ability to form collaborations. However, attempts are being made to address these issues such as by having social events over zoom for all conference attendees. And when collaborations between labs are set up, they are no longer limited by distance, as it has grown commonplace to have meetings virtually on a regular basis.
Overall, while the pandemic has been a challenge as a scientist with a disability, the resulting shift towards more virtual options have improved accessibility. While there has now been a push for things to go back to ‘normal’ in-person events, I hope the hybrid option will remain. This will help close the gap and allow more patients with rare diseases to find careers in the sciences.