Dan Gorenstein: By many measures, this pandemic has been disastrous for people with disabilities.

In England, 6 out of every 10 people who died from COVID in 2020 had a disability.

In the US, similar data are alarmingly impossible to find.

But studies here do show some people with intellectual and developmental disabilities are up to eight times more likely to die of COVID.

Those numbers are no surprise to the people who lead the lives behind them.

Jeiri Flores: Everyone with a disability that I know was like how do we survive this and not die. That was the conversation. Everyone said they were going to die.

DG: Today, one woman living with a disability on a year of fearing, fighting and ultimately, surviving a pandemic.

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein, and this is Tradeoffs.

** 

DG: Around this time last summer, Jeiri Flores should have been out with friends celebrating some big milestones…a 30th birthday…a one-year work anniversary at what she calls her first big girl job.

Instead, she marked the occasions barricaded inside her parents’ house, terrified.

JF: I was like, man, I can never leave my house. I’m going to die. And I was telling my mom, I was like, “Mom, we can’t let nobody in this house.”

DG: Jeiri was born in Puerto Rico and moved to Rochester, New York at two years old. And that’s where she lives today with her mom, dad and brother. Since birth she’s also lived with cerebral palsy, a neurological disorder.

JF: The easiest way to really explain it is if we think of our body like a river or a stream, right? Our brain sends off boats to every limb in your body and that message tells your body what to do. So my boat is in the lazy river because the boat works slower to get to all of my limbs.

DG: How does that disease manifest itself in you?

JF: You could put a hundred people with cerebral palsy in the room and no one would be the same. For me, I struggle with fine motor skills. I don’t walk. I have issues with balance. I can’t, you know, I can’t stretch my arms out all the way. I can’t stretch my legs out all the way. I don’t have a lot of trunk control. So that’s just what it looks like for me.

DG: In several ways, Jeiri’s disability set her up to handle all the pandemic could throw at her.

First, she’s been forced to deliberately think about how to get around. She relies on wheelchairs so much she’s named every chair she’s ever had. This one is Clyde. 

JF: My chair before this name was Bonnie. Bonnie was like the truth. It was the best chair I ever had in my life.

DG: Then there’s all the logistics, all the hours Jeiri spent scoping out stores’ websites for surprise stairs and accessible bathrooms…planning who’s going to pick her up and drop her off. 

JF: There is not a place in time in my life that I can tell you like, “Ooh, I was spontaneous then.” Like never, no, I needed to plan today yesterday. 

DG: And finally, Jeiri depends a lot on friends and family, a group she calls her own personal army.

JF: So, yes, I’m 30, but I live at my momma’s house because truly that is the safest place for me to be.

DG: Put it all together and Jeiri had what we all wanted in lockdown: a close knit support circle and a whole lot of prepping and planning skills. But those strengths, says Jeiri, could only help so much in the face of the pandemic’s major dual threats.

First, there was the economy.

Jeiri works as a disability advocate and educator at an academic medical center she’d prefer not to name. It’s a job that took her years to get.

JF: Money is a constant worry for me. I worked as an AmeriCorps member before this position and I was making three to four dollars an hour, so I was broke.

DG: So making $45,000 a year now is a big deal. As soon as COVID hit, Jeiri worried her job would get cut…

JF: I was afraid that I was going to be furloughed, so I didn’t spend a dollar out of place. If I did, I was nervous. Cause I was like, oh my God, I shouldn’t have did that because I don’t know what’s going to happen.

DG: That self-imposed austerity put Jeiri in a tough spot one day when she was out with her mom getting groceries. 

JF: Normally I can run laps in a Walmart and be fine. I get to the parking lot and Clyde couldn’t make it up the ramp into my van. My mama is like five-foot-one, and she’s trying to push these 300 pounds in the car because the chair is dead. And so I’m trying to pull from inside of the car, anything I can to help with like some of the force and we couldn’t get it really in the car because it was dying.

DG: Clyde’s battery kept giving out.

For Jeiri, this wasn’t like her laptop dying on the plane or her iPhone overheating. 

Her house-on-wheels malfunctioning threatened to immobilize her, turning her into even more of a COVID captive. 

JF: Like my wheelchair not working is, like, top three of the things that could go wrong in my life. It’s a huge fucking deal. Like when this wheelchair stops, when it doesn’t work, my world stops. Imagine having to pee and be at the mercy of someone else…wanting to eat and not being able to move from one room to the next…not having the luxury of just going to wash your body when you want to.

DG: A similar repair eight years ago had set Jeiri back $500.

Many of us worried about our finances during the pandemic, and Jeiri’s family was no different, especially after her dad lost his job that summer.

If it was pinching pennies or having some modicum of freedom, Jeiri decided to save the money. So she spent the first six months of the pandemic working around this problem.

JF: Anytime I wasn’t moving, I was charging because if not, Clyde was dead. 

DG: Jeiri stopped counting on people too small or weak to push Clyde if he died. That included her respite worker, who she relied on to get her out of the house and away from her family.

JF: And I was like, I can’t go nowhere with her because this pregnant woman can’t push this chair into this van.

DG: She even stopped having outdoor visits with friends because Clyde couldn’t make it through tall grass.

So she finally decided to call up a local wheelchair repair company. Three weeks later, Clyde’s battery was replaced and he was running like new. But the biggest relief of all…came when the repairman handed Jeiri the bill.

JF: Once he said I didn’t owe anything, I was like, praise Jesus, Allah and everybody and they mama and I just signed my name and was just grateful that there wasn’t a cost to me.

DG: Her insurance had picked up the entire cost.

Beat

DG: In a lot of ways, Jeiri’s saga with Clyde epitomizes what the past year and a half has been like for her. Days full of fear and anxiety, but also creativity and resiliency…fighting and ultimately making it through.

But as stressful as Jeiri’s financial worries have been, they pale in comparison to the other big threat COVID posed…to her health. When we come back, medical rationing begins, group home deaths rise and Jeiri sees a sliver of hope. 

MIDROLL

DG: Welcome back. 

Today, we’re following the journey of Jeiri Flores through the last year of the pandemic. She lives in Rochester, New York with cerebral palsy, a developmental disability.

And for most of 2020 and the beginning of this year, one single thought terrorized Jeiri’s mind.

JF Montage: When the shutdown was first being announced, I’m like, damn, I’m going to die. // I’m afraid to die. // This fear of dying…if I was talking to you, I was telling you I was gonna die.

DG: Jeiri says she stayed up until 3AM most nights wondering whose hands she had touched…was that body ache an early sign of the virus or just a cerebral palsy spasm?

Both her dad and brother are essential workers, and Jeiri knew her lungs were compromised. She has asthma and had gotten pneumonia in early 2020.

All risks, sure, but the reason Jeiri was so scared: She had absolutely zero trust in the U.S. health care system. A fear that was affirmed by news out of Texas just a few months into the pandemic…

News clip: It is an exchange that’s gotten a lot of attention online, a doctor at St. David’s hospital in Austin, seemingly refusing to treat a patient // News clip: Michael Hickson died less than a week after the hospital stopped his treatment. Several disability organizations have filed complaints // News clip: They say he was denied treatment because of his significant disabilities.

JF: They killed that man, because he was a quadriplegic. And they were like, “Why would he want to live?” And they let him die.

DG: When you read that story, what did you, what were some of the things that went through your head about you?

JF: So I just knew that this meant that I would die. If it was my turn, that I would be him. Like he wasn’t him to me. He was me to me. You know what I mean? Like, you know, we’d just trade places.

DG: The health care system hadn’t ever left Jeiri for dead, but it had certainly made her feel invisible, like a second-class patient. Identifying as Hispanic, Black and disabled, Jeiri says she can never be sure why she isn’t getting the care she needs, but whatever it is, it usually feels like bias.

Like during a recent hospital stay when Jeiri sat in her chair, hooked up to an IV, desperate to use the bathroom…and no one came to help her…for forty-five minutes.

She was angry, she says, but not surprised.

JF: I mean, that’s repeated to us in every shape, way or form. There’s not one piece of realm of life where people with disabilities aren’t made to feel less than.

DG: Jeiri continued to see how the larger health care system kept failing people like her during the pandemic. 

News clip: Behind the walls of this group home for the developmentally disabled in Bayville, Long Island, fevers were spreading like wildfire. 

DG: People with intellectual and developmental disabilities were at great risk.

News clip: There is growing concern tonight about COVID-19 and the thousands of people with developmental disabilities who are living in group homes. // News clip: New numbers show coronavirus cases are soaring in adult group homes. More than 1,000 have tested positive. And it’s not just the patients who were affected.

DG: Experts say there is no national tally of how many total people with disabilities or even just in group homes died of COVID. 

But the state data we do have, for example, show the mortality rate in New York group homes was 8 times the statewide rate. And in Oregon, people who caught COVID in group homes were 4 times more likely to die than others in the state.

Together, all those stats, all her past experiences, had Jeiri prepared for the worst.

JF: That meant that my army needed to be ready, right? And so at any stage, if something was to happen to me, they needed to be ready to fight. We were constantly having these conversations — me and my friends, me and my parents, me and my family members — that if I was to get COVID, that there were things that they needed to do so they could assure that I really was receiving the care that I needed; because if not, I was going to die.

DG: Jeiri’s pretty consistently held the U.S. health care system in low regard and living through all this has just cemented her views. 

JF: The healthcare system has been trash for people with disabilities before COVID; it is trash now; and it will be trash afterwards.

DG: The rub for Jeiri — and the larger disability community — is that she counts on the U.S. health care system no matter how poorly she’s treated. At the beginning of COVID, Jeiri says she and her friends with disabilities talked about the same two goals over and over again.

JF: One is how do we get the vaccine? Two: How do we survive this and not die?

DG: Jeiri was lucky. She got vaccinated pretty early, back in March. That was not the case for everyone with disabilities. 

So, here we are in July and yes, Jeiri’s been constantly stressed by the economy, the virus and the health care system, but she’s managed to meet both goals. 

She still has her job. And even though she got COVID back in January, she never got too sick. 

There was one other bright spot: The corporate world finally started to transform in ways Jeiri and others with disabilities had been demanding for years. 

JF: For me, it’s beautiful! Because I live in a place that is cold and it snows for a very long time… 

DG: Jeiri gets to work from the comfort of home, where she doesn’t have to deal with unshoveled sidewalks and icy roads, where she knows the bathroom is wheelchair accessible.

JF: That makes my life 10 times easier, you know. The energy and time that I would spend to prep to get to you, I don’t have to spend that. So I can do a better job for you, because I can navigate my energy different.

DG: Jeiri’s even pursuing a master’s degree that she’d put off because she’d worried about the logistics of getting around a campus. And at the same time, this newfound flexibility is bittersweet, and could be fleeting. 

When people with disabilities asked for similar accommodations for years, schools and employers repeatedly told them there’s just no way. Now, Jeiri and other advocates wonder if they’ll have to fight these fights all over again when COVID fades.

JF: When we talk about going back to normal, what do you mean when you say normal? Like what do I like, what do I really got to explain and say so that you see that this is a value that I, you know, I feel like I work harder at home than I do at work? So it’s like, how do I navigate that? And how do I have those kinds of conversations?

DG: Jeiri says those concerns highlight the importance of legislation to take decisions out of the hands of individuals and employers who don’t always have the same priorities. She says the Americans with Disabilities Act, which turns 31 years old this summer, is in desperate need of an update.

As Jeiri and other advocates fight for those kinds of advances, they may suddenly have millions more Americans by their side.

Of the more than 30 million Americans who have had COVID, experts estimate as many as a quarter suffer from a new kind of disability, known as long COVID, whose symptoms can include brain fog, fatigue and muscle pain.

For them, Jeiri’s got a few simple pieces of advice for navigating their new normal. First…

JF: Get on social media. There’s bound to be plenty of groups of COVID survivors, where you can share like today sucked. 

DG: Second: Take advantage of the invisibility of your new disability…

JF: The perception is still that you’re you, so use that to your advantage and demand more in the spaces that you’re in. 

DG: Third…

JF: Share your voice. Really be open and honest and be willing to be vulnerable. It’s going to be uncomfortable at first, but people with disabilities, we don’t really have a choice. 

DG: And last, never forget that you matter.

JF: That’s the thing — you always matter, like especially, if you survive COVID. To me, anyone who survives any kind of illness that could have been terminal, the universe said, “Oh, you need to be here. You ain’t done yet.” So if you got purpose, then you need to live in that because the universe ain’t done with you. 

DG: Jeiri, thank you very much for taking your time to talk with us on Tradeoffs.

JF: No worries. Glad to be here.

DG: I’m Dan Gorenstein and this is Tradeoffs.