It still feels difficult to believe that we’ve made it to this moment: COVID-19 cases have plummeted, vaccination rates are nearing herd immunity, and restrictions have been lifted! Life can return to pre-pandemic normalcy. Music festivals are back on, restaurants are bustling, and schools are set to open in-person come September. I feel tremendous gratitude for everyone who made this possible — healthcare workers who kept us alive; essential workers who kept us afloat; scientists who created these life-saving vaccines; everyone who made sacrifices, stayed distanced, and wore masks to slow the spread of COVID-19. We made it through, together.
While we all breathe a collective sigh of relief, many of us in the chronic illness and disability community also face this return to normalcy with trepidation. For some, life in quarantine was not all bad, in fact may have been an improvement. Many of the forms of accessibility we’ve been fighting for for years were suddenly viewed as acceptable once it was required for the pandemic. Some of the complicated aspects of being homebound, which we’ve tried to explain over and over, were suddenly understood by those trapped by lock-downs. The shifting expectations of COVID life allowed us to make space for our needs in ways not previously possible.
We reached out to some of our Friends in the Fight to hear what aspects of quarantine they are going to miss:
1. virtual access
Showing up in person — whether to a job, a class, a social event, etc — can come with a slew of barriers. For some people, simply having the energy to make it out of the house and back home is not a given. Schlepping the necessary medical gear can get complicated. Transportation may not be available for everyone. Regardless of reasoning, being able to access everything from religious services to doctors’ appointments without leaving the house has been a game changer. And it doesn’t just benefit the chronic illness and disability community; virtual events are cheaper to organize and therefore more affordable for those who may not have been able to attend due to income. People in rural areas who didn’t have many local options could attend events far away without having to travel long distances.
2. lower pressure
Another pandemic perk I’ve heard from many Friends is that there is more understanding for people just taking care of their own needs. With the collective stress and grief (and brain fog) we all experienced this year, more people were willing to give you a pass. Missed a deadline at work or school? Well, we get it, just do your best next time. Need to skip a virtual gathering because your eyes need a break from your screen? Yeah, we’re all pretty Zoom-fatigued… you do you. Need to take the night off and escape into a show or book? No shame, we’ve been there!
3. slower pace
Similarly, when we all stay home for a year, the expectation to go out and do things disappears. In the early stages of lock-down, we were forced to disengage from all of our commitments and social events. As we slowly eased back into yoga classes, volunteering, and hanging out with friends, we had the space to really examine what we felt motivated to get back into, what brought joy. Many of us with chronic illness and disabilities have felt pressure to show up at the same manic pace as our peers (let’s face it, even healthy, abled people could benefit from slowing down!). When we realize how much our health suffers at that pace and try to slow down, we are met with resistance and even judgement. We have to choose between disappointing others and negatively impacting our health. During this past year, no one expected us to show up. We could go entire months without seeing friends and no one would think twice about it.
4. empathy
Perhaps a subtler change has been the widespread empathy gained for what it’s like to be stuck at home. As one Friend put it, overnight “it wasn’t weird to be stuck at home. Everyone else suddenly understood what it was like to be forced not to be able to work or go out.” Not only could we see our daily life reflected in the lives around us, but people started to have empathy for our situation. It is hard to not be able to go out when you want. It is scary to fear for your health and safety on a daily basis. Staying home is not a poor choice we’ve made for ourselves — it’s a necessary step for ensuring a healthy future. Even the subtler aspects of living with illness or disability became more understood by others. Those of us who have been stared at or ostracized because we needed to wear masks now feel like the cool kids who had masks before they were mainstream. Healthy, abled people now know how exhausting it is when every tiny decision you make throughout the day could be life or death.
a new normal?
When we talk about going back to normal, the reality is that pre-pandemic normal was actually quite challenging for our community. While we may feel excited about some aspects of life returning, we long for a world in which our needs are respected, understood, and met — without millions of people getting sick to make it possible. We now know these systems can work. For years we’ve been told that working remotely was not an option, but we now know it can be quite viable! How many sick and disabled workers could get back to careers they loved and support themselves financially if we continue to allow remote work? How many patients could access the specialists they desperately needed to see but were too far away, if we continue to practice telemedicine? I hope the world remembers what quarantine felt like and continues to feel empathy for those who remain at home. I’ve heard from multiple Friends that their health actually improved this year, despite the stress, because they were able to slow down and listen to their body. I hope we can all respect one another’s pace and agency to say no to what feels like too much.
Let’s get back to life, but let’s make life from now on a different kind of normal: one that includes all of us.
Want to be part of the conversation? Join our Friends in the Fight facebook group!