This summer, at the age of 57, I was finally able to fill out my own census form. In the past, I’ve had to have my wife do it for both of us. But this year, for the first time ever, it was online and therefore accessible to me.
Because of my disability, a form of spinal muscular atrophy, I can no longer hold a pen or manipulate paper. But thanks to adaptive technology, I can click a mouse.
These days “reasonable accommodations” apply to everyone—not just people like me.
Take, for example, voting.
Thanks to the pandemic, most of us can vote at home this year. No more worrying about whether a polling place is accessible. No more trying to squeeze my wheelchair into a small booth with someone able-bodied accompanying me. No more having to whisper my voting choices so that no one outside the booth can hear.
Every registered voter in my home state of California is receiving a mail-in ballot this year. It’s so much easier to indicate my choices to my designated helper in the comfort and privacy of my own home—and of course, this way I don’t care whether my local polling place is wheelchair- friendly or not.
Actually, I’ve been voting by mail for years. But this time when I voted, it felt different. My “reasonable accommodation” is everyone’s reasonable accommodation. My voting technique doesn’t stand out. I’m doing it just like everybody else.
That’s a good feeling.
The pandemic has been terrible in many ways, perhaps especially for those of us with disabilities or chronic health conditions. Even those of us who aren’t in nursing homes are more likely to catch COVID, apparently, although the experts aren’t clear about that: “Most people with disabilities are not inherently at higher risk for becoming infected with or having severe illness from COVID-19,” says the CDC website. “However, some people with disabilities might be at a higher risk of infection or severe illness because of their underlying medical conditions.”
My lungs are already subpar. I don’t need extra, long-lasting, acute respiratory inflammation and distress, thank you very much.
Another big COVID-related fear involves the isolation of quarantine. Without someone else to help with my daily, all-day-long needs—bathing, eating, drinking, positioning, going to the bathroom, etc.—I’d be a mess. A host of ancillary problems would ensue. Bedsores, bladder infections, starvation, dehydration, respiratory infections—all possible complications of isolation.
Yet for many of us, the pandemic has had an upside. I love Zoom meetings. As with voting, I don’t have to go anywhere, or worry about access, and we’re all on the same footing. I love it that some first-run movies have gone straight to streaming services. Again, don’t have to worry about transportation to the theater or whether the theater has an accessible bathroom. Even museums have made their exhibits available online!
And I can’t say enough good things about telemedicine. Who wants to go to the doctor’s office, wait around forever, and be poked and prodded unnecessarily? Sure, if you need to be examined hands-on, or tested or scanned, that’s different. But I think most of us are pretty articulate about how we’re feeling and what we need to feel better. In many cases, doctors say, just chatting is enough to form a diagnosis or recommend a treatment.
Our realities are becoming universal
When everybody feels hampered by an inescapable physical reality—the potential threat of catching a virus that, to date, has taken the lives of nearly 7% of the country’s population—some of the realities of life with disability become universal. The inconveniences, the frustrations, the fears for our health and our very lives. In a sense, to an extent, everyone is living a little like a disabled person.
I joke, of course. There is much more to living with a disability. The fact that I still need to rely on outside help just to function, help that could be carrying the contagion, is but one sign of my vulnerability. But I do think that a lot of what the world is dealing with is not unfamiliar to those of us with disabilities.
As Amy Gaeta, an activist and Ph.D. candidate in the Literary Studies and Visual Cultures programs at the University of Wisconsin-Madison, put it in the Disability Visibility blog, “Amid this pandemic … I see how much nondisabled people need the disabled community. We are experts when it comes to isolation and pandemics. We know how to advocate our legal rights as patients, navigate Medicaid and other private insurance claims, and stock up on supplies for weeks. We know how to live vulnerably, which is to live together. We know all this because, for many of us, it’s our daily reality.”
Maybe something good will come…
Maybe something good will come of this pandemic. Maybe more people will understand and not look down on the way we the disabled live. Maybe we can keep having virtual meetings, and culture and entertainment readily available on our devices.
Maybe we can keep voting by mail. At least until we are able to do it by computer.
Ben Mattlin is a Los Angeles-based freelance writer. Born in New York City in 1962 with spinal muscular atrophy, a congenital muscle weakness that causes paralysis and related health issues, Mattlin graduated cum laude from Harvard University in 1984. He was one of the first students to do so using a wheelchair. Today, he lives in Los Angeles with his wife, one of their two daughters, a cat and a turtle.
Ben is the author of MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, and IN SICKNESS AND IN HEALTH: Love, Disability, and a Quest to Understand the Perils and Pleasures of Inter-abled Romance (Beacon Press: 2018). He is a frequent contributor to the Washington Post, New York Times and Financial Advisor magazine. His work has also appeared in the Los Angeles Times, Chicago Tribune, and USA Today, and has been broadcast on NPR’s Morning Edition.