Rabbi Elliot Kukla
Rabbi Elliot Kukla

Disability during a pandemic: Why you should put a spoon on your seder plate this year

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Like many Jews, I will be having my Passover seder online this year.

Frankly, it’s a relief.

For the last few years, my main concerns at the seder have been figuring out how to precariously arrange my chair and pile of cushions in such a way that I could sit that long without too much pain or fatigue, and still be upright enough to manage dinner with my toddler and a roomful of his friends.

Seders usually led to days, if not weeks, of pain flare.

For several years, between 2014 and 2017, I was too sick to get out of bed for seder. I spent the first nights of Passover in bed with a haggadah and my partner, feeling isolated and alienated from the rest of the Jewish world.

In some ways, a virtual seder feels like the larger Jewish community is coming over to meet me where I live. I am a chronically ill rabbi, and I serve ill, bereaved and dying people at the Bay Area Jewish Healing Center in San Francisco.

I’ve been meeting with chronically ill clients virtually, and bringing housebound people into my grief and other support groups via video-conferencing for many years. Many of my chronically ill clients feel as I do: Sheltering in place has somewhat broken down the isolation of illness, as the rest of the world learns the tools sick people have always had for staying connected from home.

Zoom is not the only tool that makes living at home more sustainable. Many chronically ill and disabled people have skills for slowing down and “circles of care” to sustain us in hard times.

These skills are desperately needed in this moment, and are beginning to be adopted by the culture at large. And yet, even while our strategies for survival have never been more widely employed, disabled and sick people’s lives have never been more at risk.

Not only are chronically ill, disabled and elderly people more at risk of severe complications from Covid-19, but hospitals in this country are already starting to make triage decisions that see our lives as more disposable. The U.S. Office for Civil Rights, as well as numerous disabled activists, have raised alarm bells that rationing medical care based on age or ability is illegal in this country.

But it’s already becoming clear that chronically sick, disabled and elderly people will be at the bottom of most triage lists, based on factors like “survivability” and “years of life left.”

As one disabled activist said to me, “It feels like we’re facing a planned extinction.”

In this context, I feel both sad and angry when I see memes flooding the internet valorizing Covid-19 as a blessing in disguise.

My Facebook feed is filled with hoax articles about dolphins returning to the Venice canals, and people proclaiming this pandemic will be the cure for climate change. There are new sound bites every day: “We are the virus, Covid is the cure” or “Coronavirus is Earth’s vaccine.”

It’s particularly ironic to represent this pandemic as a cure-all for climate change when the federal government is using it as an opportunity to temporarily eliminate environmental controls on businesses, a move driven by lobbying from the oil and gas industry.

This is not to say that we are not changing as a society right now, and learning extraordinary things about how to care for each other.

Most of us learn a lot from rapid, massive changes, whether they are wonderful or terrible. I remember in the exhausting first days and weeks after my child was born, realizing that I was learning about new varieties of love.

The problem, as many sick and disabled people have pointed out, is using sickness as a metaphor. This reduces the very real experiences of sick and dying people to symbols for well people’s greatest hopes and fears.

If this pandemic is a teaching moment for humanity, then the lives of the dying are reduced to lesson plans for the survivors.

When we do reach for metaphors at our seders this year, let them be ones that center on chronically sick, disabled and elder Jews.

In the early 1980s, Susannah Heschel responded to homophobia by suggesting that we put an orange on our seder plates to remind us of the struggles of gay and lesbian Jews. Over time, adding a bright flash of citrus to seder plates has come to represent gender and sexual liberation writ large in Judaism.

This year, what if we put something new on our seder plates?

The term “spoon theory” was coined by Christine Miserandino in 2003 to describe the very limited units of energy sick and disabled people have to meet our basic needs each day. In her essay, Miserandino says each spoon represents a task of living, like taking a shower or getting out of bed. Because able-bodied people typically aren’t concerned with the energy expended during such everyday tasks, spoon theory helps others empathize with the impacts of chronic illness or pain on daily living. Spoons are widely discussed online, and many chronically ill and disabled people identify as “spoonies.”

A spoon placed tenderly on the seder plate holds multiple meanings: It represents sick and disabled people, as well as elders, but it also represents the need for everyone to tend to their energy in this time of shelter.

A spoon on your seder plate is also a symbol of nourishment and care.

You may want to read something at your virtual seder written by a sick or disabled Jew, like this essay about the urgency of protecting disabled lives by disability scholar and activist Rabbi Julia Watts Belser.

Or this multi-layered reflection on the political and cultural meanings of Passover foods by Puerto Rican Jewish disabled elder Aurora Levins Morales.

Or even a part of this piece you’re reading right now.

When the ancient Israelites left slavery in Egypt, they did not head immediately to the Promised Land, flowing with milk and honey. Instead, they set off into the arid wilderness, unsure where they were going or what they would find.

As seders end this year, we too will find ourselves in the wilderness.

We are in new, uncertain terrain, where many of the economic and social structures of the old world are no longer relevant. Whatever is coming next is unknowable.

Like the actual desert, what makes moments of transition so unnerving, and so filled with potential, are the wide, open spaces: the huge, arching sky and expansive sandy plains of the desert.

This virus is neither a blessing nor a Divine lesson, but I do hope we don’t return to our pre-coronavirus lives.

In the absence of fundamental change, the disregard for chronically ill, disabled and elder lives that this pandemic has revealed will still lead to health-care disparities and unnecessary deaths. Destruction is not to be valorized, but it does bring room for creation.

In the open space that this pandemic brings to us, we have a chance to pause and begin building a new, more just world.

The views and opinions expressed in this article are those of the author and do not necessarily reflect the views of J.

Rabbi Elliot Kukla
Rabbi Elliot Kukla

Rabbi Elliot Kukla is a rabbi at the Bay Area Jewish Healing Center in San Francisco. He provides spiritual care to those who are ill, dying and bereaved.