Opinion | My Life Is More ‘Disposable’ During This Pandemic

Today my father has Parkinson’s disease and dementia, and lives in a skilled nursing facility. Even before Covid-19, it was a struggle for people to act as if his life was still worth protecting. They speak about him in the past tense, using language like “no quality of life.” The term “useless eater” hangs just beyond what’s said aloud. I am terrified of how Covid-19 will hit him, and everyone I care for with dementia in my hospice program.

As a disabled, Jewish, second-generation Holocaust survivor, the words “useless eater” are practically in my DNA. I can taste the tang of them in my mouth as I read the news, in the bitterness of Italy’s policies, in this country’s callous health care, in affluent people refusing to listen to sick and disabled voices and stay home when they can afford to, in the dismissive internet comments that only the sick and old need to worry, so who cares?

My cells remember other things, too. That to survive illness and trauma, whether individual or communal, we need one another, including strangers. When my father was two years old, hiding from Nazis in a Christian foster home, he developed a loud case of whooping cough. He was dropped unceremoniously at the doors of a Belgian nunnery. These women nursed him back to health, and returned him a few months later, fully recovered. I wish I knew their names. These faceless women to whom I owe my existence, who cared for him, bathed him, changed him, powdered him.

In this moment, one of the best ways you can show up and save the lives of fellow human beings is by withdrawing physically. Staying away from other people contradicts our image of what saving lives looks like. We are used to heroes rushing in. But disabled and sick people already know that stillness can be caring. We know that immune systems are fragile things, and homes can’t always be left. Rest is disability justice, and right now it is one of our most powerful tools to keep one another alive.

I have spent years of my life rarely leaving home. Being stuck at home due to illness often sucks, but sometimes it is other things, too. Calm. The kinds of connection that can only come from profound slowness, from borrowing down instead of stretching out. Even as we withdraw physically, our emotional and spiritual need for others has never been more visible. I already knew that we needed one another in intimate ways that go beyond the capacity of our bodies to connect. Disabled people are experts in deep, luscious intimacy without touch. We are used to being creative. As the Disability Justice performance project Sins Invalid says, “We love like barnacles,” sticking to one another wherever, and however we can.

Jewish mysticism holds that the letters of a Torah scroll are black fire on the white fire of the parchment. In this moment, we must find a way to make the spaces between us holy. In this pandemic it is the white fire that will hold our abundant love, our exquisite care, and our unwavering belief that each of our lives is worth saving.

A collection of 60 essays from this series is now available in book, e-book and audiobook form: “About Us: Essays From the Disability Series of The New York Times,” edited by Peter Catapano and Rosemarie Garland-Thomson, published by Liveright.

Elliot Kukla is a rabbi at the Bay Area Jewish Healing Center in San Francisco. He is at work on a book about being chronically ill in a time of planetary crisis.

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips. And here’s our email: letters@nytimes.com.

Follow The New York Times Opinion section on Facebook, Twitter (@NYTopinion) and Instagram.

Source link

Leave a Comment