No Re-Entry
For Many, There is No “Getting Back to Normal”
The United States reached it’s goal of 70% vaccinated adults a month late and during an outbreak of COVID19's delta variant. Children under the age of 12 remain un-vaccinated, but the country has reopened for business, and in-person schooling will begin again in the coming weeks. Despite rising cases across the US, and dire warnings from experts that another wave is on the way, we appear to be resuming a pre-pandemic pace of life. Everyone seems ready to get “back to normal.”
But what if there is no normal? What if there never has been?
I’m going to ask you to come with me on a journey. For the moment, let’s leave the arguments about vaccines, masking, and quarantine behind, and imagine a different sort of world from the one most of us live in.
In this world, it’s a Monday morning. You know the sun is up because there’s light in the room. But you aren’t allowed to open the blinds yourself. Instead, you ring for assistance. Someone else has to do that bit. And they are also the ones who get you up and dressed. You’d like to go out for a walk, but you don’t get to do that until Tuesday. (Tuesday is the only day you go out.) You spend a lot of your time using devices, like a computer or smart phone or other technology. That’s how you communicate with the world. You use it to order groceries and food, too, but not until Thursday, because you have to get in line for that sort of service.
I know this sounds like the quarantine experience I just said we were leaving behind, but the scenario isn’t dictated by a pandemic or fear of a virus. Instead, it describes the problems of access for those with disabilities, right here, right now.
I wrote a book chapter recently about Craig Vetovitz, a quadriplegic man from Ohio. “Let’s say you’re real thirsty,” he once told Cleveland Scene magazine, “You gotta ask somebody to get you a glass of water. Then, after drinking that water, you have to ask someone to help you use the toilet.” Something as basic as dropping a fork, or turning around to throw something away; something as necessary as eating and drink and dressing and bathing all had to be done by someone else. (Craig even built his house in a circle, so he didn’t have to back up his wheelchair — a very difficult thing to do. Instead, if he overshot where he meant to go, he just went all the way around again.) Pandemic or no pandemic, for disabled persons, there is no “normal” to go back to. In fact, we should question the very concept of normal.
I spoke to disabled activist Alice Wong in a series of podcasts for my journal, BMJ Medical Humanities. We talked a lot about what disabled life looks like, and the kinds of accommodations that would make life easier. “We’ve been asking nicely. We’ve been demanding,’ she explains:
“For so many of us, having these very simple different ways to participate, whether it’s an online class, whether it’s a Zoom conference, whether it’s doing something by email versus by phone, these are things that disabled people have been fighting for years if not decades. And very often, the response has been, “It’s a burden,” or “We just can’t.”
Then came COVID19, and in a strange twist of fate, things long out of reach for those with disabilities became available. Zoom and other platforms went from half-shamed possibilities to the mainstream means of communication. Conferences went online, so that those whose disabilities that made travel or long hours sitting or standing impossible could go, engage, and be heard. Classes were offered online, and some who could never have entertained the notion of attending were able to apply. Even recreational activities improved. New delivery services, willing to cart food from restaurants to your door; new movies released on streaming platforms.
What felt like restriction for abled people was actually a leveling of the playing field. Those who clamored that their rights were being impinged miss the point: much of our freedom is a privilege, and it is fragile. For Craig Vetovitz, a mistake made on a high dive changed everything. For others, it’s a fall — a car accident — a disease — old age. “I think about [those] wishing that normal would return,” said Alice, but “normal wasn’t great for a lot of people.”
For those with disabilities, COVID19 presented a different sort of challenge. Some with compromised immune systems cannot be vaccinated even though they want to and are reliant on herd immunity. For still others, it’s a problem of timing, transportation, and access. Without meaning to, the vaccine rollout privileged abled (and frequently White, middle/upper class) people. And now, with the world attempting a deeply ambiguous re-entry to public life, those few positives of lock-down are rapidly receding: Schools are refusing to do online learning, conferences are choosing physical spaces, and even the delivery market future may be uncertain.
In demanding a return to normal, we may also be telling the disabled community that we do not care about systemic inequality. That we do not care about them, or value their lives. And this must change.
The vaccines are working, and we can be grateful. The pandemic may yet be controlled. But the lesson to learn here is not to forget — not to ignore. For a time, everyone experienced a tiny fraction of the precarity of accessibility faced by disabled people everyday. For a time, we accommodated those needs, and we still can. But if we want to change the inequality of our systems, there can be no re-entry to a universal normal. It’s time to see the world from a difference perspective, and make it a place worth living in for everyone.
