Christopher Smit and Jill Vyn

September 29, 2020

Tom Petty said it best – “The waiting is the hardest part.”

As 2020 creeps closer to its ending, the things we are waiting for are piling up: a vaccine, racial justice, a political process devoid of bitterness, community healing, and some semblance of “normal life.” Of course, “normal” doesn’t mean much anymore, nor has it ever been anything but a hierarchical concept placed on reality by those who hold the majority. Nonetheless, we wait for normal to return and offer us all the comfort and confidence we once had.

But what if “normal” wasn’t a source of security? What if returning to normal life represents a sort of backsliding destined to keep you trapped in a social position you’ve never flourished in? This is the case for millions of disabled people who sense the return of normal life and are not excited about it coming back.

Disabled people have been pushing against the normalized systems that define their realities for decades. For us, normal has become too hard to handle. In normal life, for example, disabled people face a medical infrastructure that enforces compliance rather than conversation; an economic system that (when the paperwork is correct) pays for healthcare and caregiving as long as you don’t make more than $16,753 (as of 2018), a fact that inextricably links disability to poverty; bad media representations that negatively affect the imaginations of its viewers; insufficient transportation options; lack of employment; unprecedented and unchecked discrimination and abuse from the hands of police officers; a misunderstanding that physical accessibility takes precedence over other, rarely discussed, social, emotional, and political access; and a social imagination that continues to devalue the contributions of the disability community.

At the start of the pandemic we began listening to the stories of our community. We reached out to disabled people from all over the world and asked them to tell us their COVID19 stories – My Dearest Friends Project has grown into a collection of testimonies of how virus life was really awful. The pandemic has intensified issues of isolation, feelings of being shut out of communities, and not being heard. It has created a real fear of the medical community, many of whom were focused on rationing rather than problem-solving. And of course, as the news began to report almost immediately, disabled people, especially those living in congregated settings (nursing homes, group homes, etc.) were dying in astonishing numbers.

But we also heard a person with autism speak about how social isolation has added a measured sense of quietness and control to her life. In our podcast with Patricia Kalidonis, founder of the Socially Distant Artists Residency, she said  “…I started working remotely in early March, and I suddenly felt like I had a whole bunch of energy in the evenings because I wasn’t commuting and exhausting myself.”

Many of our interviewees, with their tongues firmly planted in their cheeks, used the phrase, “welcome to my world!” when referring to nondisabled people complaining about not being able to leave their homes and get haircuts, see a movie, or go to the grocery store. This was followed by a hope that nondisabled folks would begin to empathize, or at least commiserate, with the experiences of disability that surround them.

Most importantly, we have heard an almost celebratory yelp from those disabled folks who have been able to find work more prevalently due to new acceptance of off-site employment. The mobile nature of pandemic life flattens the world just that much more so that disabled employees can have more access to jobs that were never a possibility.

In short, while pandemic life has intensified certain negative elements of the lived experience of disability, it has also, paradoxically perhaps, created an environment in which people once marginalized by the built environment and societal structures that surround them are now able to flourish and contribute.

You’ve probably heard friends and colleagues bemoan the fact that they are busier now than they have ever been. Without having to factor in transition times, driving, and other “nonessential” time fillers that occur in professional settings, meetings can be more efficient, convenient, and (for some) more abundant. We are realizing the toll it takes to be “available” at the drop of a hat.

See it another way – for some disabled people, Zoom has literally become a Time Machine able to transport them from a life filled with disconnect to one that is rich and full and productive. No longer the only person asking for permission to work from home, the disability community has felt the pressures of being singled out fall away. This does not surprise us. We’ve known the promise of technology for some time now. The Internet has given us a flat world upon which we have gathered our community, shared our manifestoes, monitored those who monitor us, and shared a message of self-actualization. These meetings that everyone complains about? We’ve been waiting for them.

It’s tricky, for sure, to look at pandemic life as offering something positive. And indeed, most of the social stresses of our current social predicament are felt by all of us, disabled or not. But as we wait for that moment for “normal” to return, it might behoove us to take heed of the following truth – that many of us are hoping that this “normal” might include new spaces and paces.

The new normal has the potential to witness lessons learned from a time period in which technology and communications brought us together like never before. The new normal will allow disabled people to contribute to the professional and personal cultures we create. The new normal won’t always ask what can be done for disabled people, but instead what disabled people can do for the greater good.

As we all wait together for the promises of post-pandemic life let’s be sure to not forget the things it’s given us that we should keep hold of.

[Journal image by Patricia Kalidonis]