Instead of supporting people with Long COVID, our government funds a genocide

At the front, a row of protestors in wheelchairs display signs in support of Palestinian liberation. Essay author Jenna Bitar is second from left. Comrades are supporting the wheelchair users, and other members of the march are visible behind them, as well as businesses and homes of Bay Ridge, Brooklyn. — Nabka Day 2021 in Bay Ridge, Brooklyn. The author is in the center, with two other friends with Long COVID on the right. The late activist and nurse, Shatzi Weisberger, is to the left of Bitar. Via Jenna Laila Bitar.

This essay is part of the Color of Long COVID series, supported by the Disability Visibility Project.

My final rejection for disability benefits was sent to me in March 2024, during Israel’s horrific, ongoing genocide in Gaza.

Before becoming disabled with Long COVID, I worked full-time in the movement for Palestinian liberation. My father is Palestinian, born in the Old City of Jerusalem, and I grew up with stories about the steadfast resistance of my people — starting with my grandparents surviving extermination in the 1948 Nakba as young children. My Palestinian family prepared me for disability, for understanding that sometimes just existing in a body deemed undesirable is a form of struggle.

Disability and Palestinian identity have always been deeply entwined, as Israel has deliberately disabled Palestinians in an attempt to silence dissent. During the First Intifada in the late 1980s, the Israel Defense Minister enacted a “broken bones” policy, ordering army commanders to break the bones of Palestinian protesters. Decades later, during Gaza’s Great March of Return in 2018, Israeli soldiers fired live ammunition in the legs of thousands of protesters. Now, tens of thousands of our youth – especially in Gaza – are targeted by Israeli snipers particularly in the knees, femurs, and vital organs, leading to wide-scale amputations and the unmet need for mobility aids.

In spite of Israel’s attempts to crush the Palestinian spirit, resistance is deep in our blood — even for those of us living in the diaspora. The values instilled by my family are deeply anti-imperial: respecting the land above all else, moving at the pace of the earth, valuing time with family and community over profit and exploitation.

If I’ve learned anything from nearly five years with Long COVID, it’s the deep failure of the U.S. administration to support people with disabilities, especially those who are Black, Indigenous, and people of color. Instead, our government uses 14+ billion tax-payer dollars to fund a genocide in Palestine.

Even with all the “proof” I could gather for my social security disability insurance (SSDI) case, I was still faced with the impossibility of receiving care by my own government. Like many with Long COVID, my initial application — sent in September 2021 — was rejected. I appealed twice, first on my own and then with the help of a poorly-qualified lawyer who rarely remembered my name. Both of those appeals were rejected, too, and my final hearing with a judge was unexpectedly rescheduled the day before it was supposed to take place.

When I finally went before a judge and “impartial vocational expert” on a video call in my bed in November 2023, the experience was humiliating. The judge was cold, rude, and mocked me multiple times. She commented that I wasn’t sitting upright and asked why I was in my bed, despite my very disability which required me to rest all day.

For four and half months, I held my breath each time I opened my mailbox, never knowing how and when my future would be determined. On a gloomy March morning, I received a 32-page detailed document explaining, point by point, how the federal government thought I wasn’t disabled. Long COVID “do[es] not cause more than minimal limitations” and doesn’t constitute a “severe impairment,” the decision stated, suggesting I could still work full-time while sitting or lying down.” The whole process from start to finish took three years.

But I couldn’t work. My fatigue and cognitive dysfunction were so disabling that I wasn’t able to follow instructions, read text, make my own meals, or even wash my own hair. I would never have been able to apply if not for multiple layers of personal safety nets – a supportive job, unemployment, savings, family, friends. When you’re that sick, you’re in a twisted catch-22: the process of even applying to get benefits is inaccessible without receiving help.

This black-and-white photo shows a Palestinian family, posing among plants. Bitar's father, at the left of the photo, holds his mother's hand. — Bitar’s father (left) and Tayta (grandma) holding his hand with my family members — many of whom were murdered by Israel in 1967. Via Jenna Laila Bitar.

Meanwhile, without approved treatments for Long COVID, healthcare providers suggested I should “de-stress.” One Long COVID “holistic” coach I worked with over Zoom proclaimed proudly that she never read the news. She recommended that all of us navigating these illnesses not consume media or news. I remembered the sudden awareness of being in an all-white group as the only person who was brown and trans.

I closed my computer and cried for hours alone in my room, feeling so much sadness and isolation — I would never get better just because I could never just “turn off,” I thought. I would never stop reading news of the brutality against my people in Gaza. I could never “unplug” from my identity.

Whether you have a complex chronic illness or not, witnessing our country actively fund and supply weapons for Israel to blow up children en masse is sickening. It is a kind of disease that takes us far away from our own bodies. I often wonder how we are supposed to have the capacity to witness these atrocities and still care for ourselves.

I spend many hours laying in bed wondering about the surviving Palestinians in Gaza with Long COVID — under the rubble, displaced, alone. Every institution that would serve to care for them has been bombed. There are no hospitals, no schools, no homes, no food, nowhere to find safety or “de-stress.”

I spend many hours laying in bed wondering about the surviving Palestinians in Gaza with Long COVID — under the rubble, displaced, alone.

It’s hard to gather any concrete information about Long COVID in Gaza, given the fact that Israel has targeted nearly every medical facility. In 2022, Israel bombed the al-Rimal Clinic, Gaza’s only COVID-19 laboratory and testing facility. But given the high rates of Long COVID in marginalized groups, we can assume the numbers are high. One indicated that 41% of Palestinians in the West Bank experienced Long COVID symptoms, based on data collected in fall 2021.

Through the ongoing pandemic, we witness the mass normalization and social amnesia of 1.2 million (and counting) Americans killed by COVID-19. Now we have spent more than a full year watching our taxes pay for bombs dropping on hundreds of thousands of Palestinian children, mothers, fathers, grandparents. One 2024 study in The Lancet estimated that as many as 186,000 Palestinians have been killed by Israel, but we know the true number is likely much higher.

When I reflect on my own experience of disability, it has actually been a lifetime of sickness. Sometimes it feels like a manifestation of generational trauma. When my father was a nine-year-old in Jerusalem, he was tasked with bandaging the wounds of his young cousin who survived Israel’s bombings in 1967. His mom told the doctors he was good at sewing. He told me how his cousin’s small arm was carved out from the shrapnel of a U.S.-made napalm bomb dropped on the room in which his family sheltered.

He also witnessed his father’s livelihood being taken by the occupation, his mother’s years of silence after an Israeli bomb decapitated her mother and killed her sister. Daily humiliations at checkpoints with Israeli soldiers who were teenagers themselves, pointing guns at their heads, with fingers on the trigger.

Herod's Gate is a large opening in a stone wall. This black-and-white photo shows the gate and other parts of the wall, as well as people walking and sitting on benches in front. — An old family photo of Herod’s Gate, in the old city of Jerusalem, where Bitar’s family is from. Via Jenna Laila Bitar.

I often feel those memories in my body as if they were my own memories. I also feel memories from my mom, who grew up Irish and working class in the Bronx, one of five kids, with a father whose trauma from World War II led to depression and abuse.

I think about the rest I need with Long COVID, and it feels like generational rest — taking time to heal from all the violence. Rejecting capitalism by just being. Tending to my plants, my cat, my own body with its aches and pains.

Being rejected from disability benefits felt like just another extension of violence. When I was applying, I heard stories about people being denied disability benefits and then dying from trying to work multiple jobs, raise children, and manage illness.

If I had won my claim, I would be receiving enough to barely cover the cost of my housing alone. Unemployed for five years, I cry over the taxes I still have to pay – taxes that directly pay to murder my Palestinian family each day. I cry for my family. I cry for all of the families in Gaza who must find creative survival strategies to exist in cold, wet tents with no food. I cry for the plants, the animals, the trees, the rivers.

As I’ve gained more energy to leave my house, I’ve started to encounter people who haven’t seen me in five years. I fear the question each time, “So what have you been up to?” The question embodies cognitive dissonance, as if we haven’t witnessed multiple genocides, with the backdrop of an ongoing pandemic our country refuses to acknowledge.

“Trying to survive” is the only answer I have.

I think about the rest I need with Long COVID, and it feels like generational rest — taking time to heal from all the violence. Rejecting capitalism by just being.

Jenna Laila Bitar (they/them) is a BIPOC Communicators Fellow with Long COVID Justice and a Narrative Architect for the ‘Listening for the Long Haul’ oral history project with University of Chicago Illinois. Jenna loves rest, crip wisdom, art, their bed, nature, and napping with their cat Rage.

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Editor’s note, January 21, 10:30 am Eastern: This article was updated to correct the war in which Bitar’s maternal grandfather served.