NEW YORK TIMES
My Life Is More ‘Disposable’ During This Pandemic
The ableism and ageism being unleashed is its own sort of pestilence.
By Elliot Kukla, March 19, 2020
Like many people all over the world, I am not leaving the house now. For me, though, staying home is nothing new. I am in bed as I write this, propped up by my usual heap of cushions, talking to other sick and disabled people all day on my laptop about how the hell we’re going to care for one another in the coming weeks with a gnawing feeling of dread in my belly.
The news doesn’t look good: There are more people sick; less relief is coming. The “reassuring” public service announcements are no better. Countless messages from my dentist, from the Centers for Disease Control and Prevention, and from my child’s playgroups tell me not to worry because it’s “only” chronically ill people and elders that are at risk of severe illness or death. More than one chronically ill friend has quipped: “Don’t they know sick and old people can read?”
The pestilence of ableism and ageism being unleashed is its own kind of pandemic. In Italy, they’re already deciding not to save the lives of chronically ill and disabled people, or elders with Covid-19. The rationale is twofold: We are less likely to survive, and caring for us may take more resources. This is not an unusual triage decision to make in wartime or pandemics; our lives are considered, quite literally, more disposable.
I am a chronically ill rabbi who offers spiritual care to those with illness, and elders coming to the end of life. Almost no one in my personal or professional world would “earn” care if the United States were to come to a scenario like Italy. Not my 102-year-old client with brilliant blue eyes and ferocious curiosity who survived Auschwitz; not my friend who is a wickedly smart writer, activist, and wheelchair user currently recovering from major surgery; nor me, with my immune system that doesn’t work well, or works too hard, attacking my own tissues.
In the United States, most of my disabled and sick friends believe we are racing to a similar situation as Italy. We have a perfect storm brewing of a large population without health insurance, many people without paid sick leave, and an already overburdened health care system. This virus is merciless. It travels through the young to attack the old; through the healthy to assault the chronically ill.
The way to save our lives is clear, according to public health experts: If you possibly can, stay home. Especially since we are surrounded by people who don’t have that option, including migrant workers; unhoused, incarcerated and institutionalized people; and health care workers. And yet young, healthy, affluent people are still taking advantage of cheap airplane tickets and using their “time off” to go to restaurants while they remain open. Taken together, the stark message to chronically sick, disabled people and elders is that we are “acceptable losses.”
The feeling of being disposable is not new to me. It is knitted into my bones and sinews. It lives in my cells and the parasites in my gut. I already knew that for many of the doctors and policymakers that my health depends on, that my transgender, fat, disabled body is simply worth less than others’ bodies. This is even more true for my black, brown, poor, disabled and ill friends.
Each message of disposability in this pandemic rings like a bell in the hollows of my body, surfacing memories. In 1990, when I was 15 years old, I came out as queer into a pandemic, as AIDS was ravaging communities across the globe. My first Pride parades were not joyful celebrations, but rageful protests as we demanded health care, medicine, witnessing. My queer uncles died before I was 20, but taught me on the way out not to trust governments or doctors, and that marginalized people must take care of one another. My first lesson in adulthood was that love is our only source of security.
The Nazis called chronically ill and disabled people “useless eaters,” and killed us first. This used to seem like ancient history to me, but as I age, the scope of time shrinks. My father hid from Nazis as a child in Belgium, and I was born just 33 years later. His history was as recent to my early childhood, as George Michael at the top of the charts, is to today. Scientists now believe that there are cellular
changes in the DNA of the children of Holocaust survivors that most likely impact our health
. My father’s story lives in my overactive immune system, and thus my body’s response to this pandemic right now.
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.
Rabbi Kukla provides spiritual care to those who are ill, dying and bereaved.
TA:_________________________________ Section Day and Time___________
Sometimes in April
1. Who does Augustin receive a letter from? What does the letter ask him to do?
2. Where and by what legal body is Honore being tried? What crime does he plead guilty to?
3. Where did Honore work in 1994? What was his job?
4. What is on the list that the government officials give to Augustin at the training camp?
5. What are in the crate that Augustin opens at the military compound?
6. What determines your identity as a Hutu or a Tutsi?
7. What event triggers the violence that quickly overtakes Rwanda?
8. Why does Augustin ask his neighbor to hide his wife and children?
9. Describe the first actions taken by the Hutu after the violence begins.
10. What is the press in the United States primarily concerned about?
11. How does Augustin try to get his family out of Kigali?
12. What happens at the roadblock?
13. How is Augustin told to demonstrate his loyalty to the Hutu at the roadblock?
14. What do the girls at the Sainte-Marie School decide to do? What happens to them?
15. Why calls to the girls hiding in the swamp? Why is it safe for them to come out?
16. What is the significance of the woman’s testimony at the tribunal? Who is the accused, and what is he accused of?
17. How would you characterize the United States’ response to the genocide in Rwanda?
18. Honore tells Augustin the fate of his wife and children. What happened to Augustin’s children? Describe what happened to his wife.
NEW YORK TIMES
It Depends on What You Mean by “Fascism”
ICE is not the SS or the Gestapo. But it
By Jason Stanley, July 4, 2019
An undocumented immigrant being arrested by an ICE agent in California. Credit John Moore/ Getty Images
On July 2, Representative Alexandria Ocasio-Cortez, after a visit to migrant detention facilities run by Customs and Border Protection in Texas,
claimed that the United States is “headed toward fascism.”
Much of the response that followed was expected, but little or none of it examined the statement closely or detailed to what degree the United States’ immigration policy justifies such comparisons. So how apt is this analogy between the current situation and early years of fascist regimes?
Liberal democracy organizes society around respect for the dignity, equality and freedom of all human beings. Fascism, by contrast, organizes society around the vilification of outsiders. In this administration’s rhetoric toward undocumented immigrants from Central America and religious minorities, we have been subject to classic fascist tropes for some time. The obsessive focus on immigration and the representation of immigrants as invaders is particularly indicative of this ideology. In the 1930s, Oswald Mosley, the head of the British Union of Fascists,
ran on a platform of ending immigration entirely
. “Britain for the British” was its motto.
Comparisons to the Nazi regime, one of which Ms. Ocasio-Cortez made last month when she called American detention facilities “concentration camps,” are also routinely met with outrage. But Hitler, too, was obsessed with immigration. In “Mein Kampf” he praised the “national State,” and he saw foreign immigration as the obstacle. He wrote of America’s anti-immigration policies as a model for a nationalistic Germany:
I know that this is unwelcome to hear; but anything crazier and less thought-out than our present laws of State citizenship is hardly possible to conceive. But there is at least one State in which feeble attempts to achieve a better arrangement are apparent … the United States of America, where they … refuse to allow immigration of elements which are bad from the health point of view, and absolutely forbid naturalization of certain defined races, and thus are making a modest start in the direction of something not unlike a national State.
The current American administration clearly does not share the toxic and murderous ideology of Nazism, nor its anti-Semitism, but when the president of the United States
from “shithole countries” while pleading for more immigrants from Northern Europe, he echoes the very aspects of American history that Hitler praised.
When we consider the character of a ruling government, we should think about the ideology that motivates it, as well as the institutions and tactics it employs to transform society. It is clear that this administration draws on fascist ideology in its rhetoric. But what about its institutions and tactics?
On June 17, President Trump
that Immigration and Customs Enforcement would deport millions of “illegal aliens.” He’s not the first president to focus on undocumented immigrants for removal. Every president since the Sept. 11 attacks, including Barack Obama, has, too. But the Obama administration explicitly
terrorists and serious criminal offenders. The Trump administration is the first in recent memory to
target undocumented families
for removal in planned mass deportation raids. Trump’s announcement about mass deportations conveyed the kind of cruelty toward outsiders that he often uses to excite his base. It was only a matter of time before such rhetoric would begin to transform our institutions.
ICE is a novel American institution —
it was created
in 2003 by the Homeland Security Act in the wake of Sept. 11, at a time when rights and liberties took a back seat to concerns about safety. The same act created the Bureau of Customs and Border Protection, tasked with policing the border and staffing migrant detention centers. In ICE, we have a special force, created in an anti-democratic moment in American history, authorized with police-like power and directed at political outsiders inside our borders. The institution itself is tied politically to the country’s leader. Trump is
the first president endorsed
by a major union representing ICE’s employees, and Trump has
himself as its chief defender.
ICE is an organization that is like the police but is not the police. The job of the police in a democratic society is to keep communities safe. In practice, ICE collaborates with conventional American criminal justice institutions, including local police departments, but often end up working at cross-purposes with them by creating fear in immigrant communities, whose members become less likely to report crime. As a result, some police chiefs have
aligned themselves recently
against ICE raids. The goal of ICE is not to make communities safer. ICE’s mission is to reinforce a distinction between “us” and “them.”
The Trump administration has advanced its more aggressive policies of enforcement by characterizing undocumented immigrants as a group of criminals, rather than as individuals. In 2017, Secretary of Homeland Security John Kelly
to portray immigrants in general as intrinsically prone to crime to justify mass arrests by highlighting “three egregious cases” to use in the media. This tactic of identifying whole groups as criminal has a shameful history. In my grandmother’s 1957 memoir of 1930s Berlin,
similar tactics by the Gestapo in 1937, who spoke of “criminal” Jews while arresting Jewish citizens who had committed minor traffic violations.
To be sure, no organizations precisely like the Nazi SS or the SA or Italy’s fascist Blackshirts operate in the United States today. There is no organization empowered to make arrests that originated as a paramilitary force, or that has an official racist ideology, or that is used to overtly target political opponents. ICE is not the SS or the Gestapo. But it has concerning similarities, including its symbiotic relationship with an increasingly authoritarian president. And it is not the only institution with disturbing fascist elements; evidence of extreme racism and sexism has emerged among members of its sister organization, Customs and Border Protection. The special circumstances under which ICE was created and now operates also lends credence to the argument that ICE is expendable, a nonessential and arguably harmful arm of government that could be eliminated.
What about the private detention centers for undocumented immigrants, which Ms. Ocasio-Cortez described last month as concentration camps? After the comparison, the United States Holocaust Memorial Museum issued a
denouncing comparisons to the Holocaust. In response, hundreds of historians and other academics working on the Holocaust and genocide responded with
a letter defending the importance of these analogies
As Kica Matos at the
Vera Institute of Justice
explained to me, journalists are barred from visiting these centers; they are open only to legal representatives and members of Congress. In early June, the Trump administration
educational, recreational and legal aid for migrant children in detention centers, sealing them off further from public view. Reports of the extreme conditions in these centers have
in recent weeks. These reports have been provided by legal representatives empowered to visit them. What happens now, as Ms. Matos asked, that funding is cut off for such visits?
Even as we are shut off from facts, immigrants will hear the stories from one another. The strategy here is to encourage them to self-deport. This, too, is familiar from history. In the November 1938 pogrom of German Jews, more than 30,000 of them were rounded up and sent to concentration camps, where they were subjected to brutal and inhumane conditions and soon released. In “KL: A History of the Nazi Concentration Camps,” Nikolaus Wachsmann, a professor of European history at the University of London, explains that the release of these prisoners made sense from the regime’s perspective, because “the camps had served their function — forcing many Jews out of Germany.” The regime’s harsh anti-Semitic rhetoric, followed by exposure of its Jewish citizens to the brutality of its camps, led to a large exodus of Jews from Germany (including my grandmother and my father in July 1939). The tactic worked. Should we therefore employ it?
There is an economic reality to this situation as well. We increasingly see connections between powerful business interests and the institutions of state terror. Wall Street gives
billions in loans
to facilitate the profits of companies who run detention centers; large companies
by selling their wares to them, and former high ranking administration officials
serve on their boards
. On the local level, county jails
enjoy newfound profits
by housing those detained by ICE’s massively broadened mandate.
A refusal to discuss fascism in the current political context in the United States obscures both the nature of fascism, representing it as an all-or-nothing matter, as well as our own troubling past. The extent to which a society is liberal democratic or fascist can be measured on a continuum. In the struggles with our racist history — against black Americans, Native Americans and immigration from non-Northern European countries — the United States has
had aspects of both. With the development of a police-like force directed specifically to force outsiders into hiding, detention centers sealed off from public view in which to detain them and an economy set up to profit from it all, we move in the wrong direction.
Jason Stanley is a philosophy professor at Yale and author, most recently, of How Fascism Works.