Life in 2020


It’s been eight months since the COVID-19 pandemic took hold in the United States, and as  we’ve moved through 2020, what began as a public health emergency has morphed into a force that has  infiltrated every aspect of our lives. Even as COVID has dominated 2020, other crises have popped up to demand  our attention. We talked with wheelchair users across the country and were immediately struck by how varied  and dramatic this year’s challenges have been, and by the strength and resilience of our community.

Dani with twins

Garret Frey

Anthony Sanchez and his daughter

Yannick and George in Contento dining room2

Battered by the Storm
Cedar Rapids, Iowa

Garret Frey survived close brushes with COVID and climate disaster this year.
Garret Frey survived close brushes with COVID and climate disaster this year.

Garret Frey was outside soaking up some August sun when he saw the clouds — dark and moving fast. When the wind picked up and the tornado sirens started blaring, he rushed inside. Frey crammed his power chair into the bathroom, the only room in the house without windows, alongside his mother and brother. Outside, there was a sudden downpour and winds ripped through the trees around their house. “We didn’t know what was going on because we lost power within seconds,” he says.

They huddled together as the storm raged for 40 minutes. A loud humming noise like a car going through a tunnel was punctuated with the smack of branches and debris hitting the house. When the wind finally calmed, they left the bathroom to survey the damage. “Every house either had damage to windows, their whole roof, part of their roof, the garages, or all of their fencing. There was nothing but trees down everywhere,” Frey says.

The Freys had survived August’s derecho, the deadly windstorm that ripped across the Midwest and damaged or destroyed an estimated 8,000 houses in Iowa alone, with losses especially catastrophic in Cedar Rapids. For Frey, who uses a ventilator, the sudden disaster wasn’t an isolated event, but the latest in a year that had already been challenging enough.

Back in April, one of Frey’s PCAs developed COVID symptoms a day after she had worked for him. She immediately got tested but it took nearly a week for the results. “It’s a waiting game,” says Frey. “All you do is live in fear.” The test came back positive.

The waiting and the fear continued, but luckily, neither Frey nor anyone else in the household contracted the virus. It was a frightening experience nonetheless, one he didn’t want to risk again.

Now, after a night with his vent plugged into a gasoline-powered generator and an August day without air-conditioning, the Freys decided that the risk of staying with family in Missouri — a COVID hotspot at the time — was less of a gamble than staying put. A few days after arriving in Missouri, his brother got sick with fever and chills.

Frey says his brother “doesn’t believe in COVID, thinks it’s a hoax,” but he agreed to go and get tested. Again, they dodged a bullet — his brother tested negative and no one else got sick. Still, it was like reliving a nightmare, except this time with the guilt that they could have exposed others.

They returned home after eight days, when the power was restored to their house. Frey, who serves on the city’s ADA Advisory Committee, went to work helping to coordinate relief efforts for elderly and disabled residents. He says that up to two weeks after the storms hit, there were still individuals with disabilities who were stuck, unable to leave their upper floor apartments. “It was a mess,” he says.

Into the Fire
Reva, Virginia

Daniela Izzie gave birth to twins during the pandemic.
Daniela Izzie gave birth to twins during the pandemic.

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Daniela Izzie, a C6 quad who works for Spinergy, was pregnant with twins when the pandemic hit. At the time, there was a ton of uncertainty — about whether her husband, Rudy, would be allowed into the hospital, about her risk of infection and the possibility of passing it to her twins — but Izzie was confident in her doctors and care team [for more, see “Life in the Time of COVID,” NM, May 2020]. As a quad, Izzie had a high likelihood of preterm birth, and true to predictions, the babies came six weeks early. The realities of life during COVID, the fragile health of the premature twins and Izzie’s own complications resulting from giving birth only heightened the emotional rollercoaster of becoming new parents.

Izzie was discharged from the hospital after a few days, but the twins, Lavinia and Georgiana, remained in the neonatal ICU for two weeks. Izzie took time off from her job but, with no paid paternity leave, Rudy had to keep working. “It was really tough because if there hadn’t been the pandemic, I could have asked my mother-in-law to take me down [to the hospital],” says Izzie. But with Izzie and the twins’ weakened immune systems, they had decided to completely self-isolate. “I had to stay home, away from the babies, all day, until Rudy got off work at five. And then we drove down there, 45 minutes, and we would stay there until 11 p.m.”

They were isolated from family, cut off from their community by the pandemic. The church meal train they had planned on didn’t happen. They wound up eating ramen and other basics, or, on some nights not eating at all at the NICU. Izzie was recovering, immunologically compromised and further stressed by the fact that she and Rudy could be bringing germs to their still fragile infant daughters. Furthermore, cut off from her babies for most of the day, Izzie developed milk supply problems she wasn’t able to recover from. Not being able to provide breastmilk “was emotionally devastating.” she says.

Looking back at those first weeks, she says, “It was a nightmare.” But at the time she didn’t think of it that way — she couldn’t. “I was just doing what needed to be done. I wasn’t allowing myself to be introspective about the whole thing because that would have been too hard.”

Dani's documentary
Dani’s Twins Film

If Daniela Izzie’s year wasn’t wild enough already, she’s also been filming Dani’s Twins, a documentary that chronicles her journey to motherhood. Izzie says the filmmakers have steered clear of the typical inspiration porn, instead bringing a “commitment to learning about disability and motherhood, and telling an unfamiliar story in a way that is truly authentic.”

The film is scheduled for release in 2021. For updates and to see a preview, visit danistwinsfilm.com.

The emotional load eased a little when the girls came home. But Izzie only was able to take six weeks off work, making for another tough transition. When she was first pregnant, Izzie had planned to hire a “mother’s helper” as she called it, basically a PCA that could help her with all the mom tasks — from buttoning clothes, to bottle preparation, cleanup and countless others. But in the height of the pandemic, she didn’t feel comfortable with the exposure of bringing a stranger in their home. “We just don’t know if we can find someone that we can trust,” she says.

The babies are now five and a half months old, healthy and active. Even with family coming to help, between working full-time, raising twins, and managing life as a quad during a pandemic, there’s a lot to juggle. For Izzie though, there wasn’t a choice. She’s figured it out because she had to. That’s what moms do. Being a mom brings her real joy. “We’re over the moon … just so happy that there’s something good happening in our lives,” she says.


Follow Daniela Izzie
Insta: @daniizzie
Website: danniizzie.com

Daddy/Daughter Time
Fort Worth, Texas

Anthony Sanchez and his daughter, Mya, have become even closer by trying new, COVIDsafe things to do together.
Anthony Sanchez and his daughter, Mya, have become even closer by trying new, COVIDsafe things to do together. Photo by Jacklynn Lomeli.

When Anthony Sanchez talks about his daughter Mya, you can hear the smile in his voice. “She’s amazing. She’s outgoing. She’s funny,” he says. I don’t know if she grew up faster because of my injury … but she’s very mature. She’s sassy. She’s everything.”

Mya was born seven months after Sanchez started using a wheelchair due to a motorcycle accident that left him with a spinal cord injury at T4. She was about 8 months old when Sanchez and her mother split. Sanchez was battling depression after the accident, but he says, “I always wanted to make sure that I was going to be a great father, regardless. I didn’t plan on splitting up with her mother. I wanted to have this perfect family.”

Reality had interrupted his plans, but Sanchez, who shares custody of Mya every other weekend and whatever weekdays he can, was confident he could figure it out. And he did — from using a reacher to put Mya’s bottle in the microwave; to learning how to roll with her on his lap, one arm holding Mya, one arm pushing a wheel and back again; to, as she’s gotten older, dancing with her at daddy/daughter dances. “Anything they have that I can participate in. I’m doing it. Even if I suck at it, I’m going to do it,” he says.

An unexpected benefit of the world shutting down was that it brought Sanchez and his daughter even closer. He used to take her out everywhere, to the salon to get her nails done, to the movie theater or to Chuck E. Cheese. With everything closed, he’s been finding new ways to keep her occupied. “Kids get bored really easily,” he says, laughing. He tries to bring their favorite activities home. They’ll bake cookies together, make popcorn and watch movies — they even set up a living room nail salon. “She would say, ‘Dad, I’m going to paint your toes.’ I’m like, ‘All right, cool. You paint my fingers too.’”

Of course, it’s not all easy. Mya just started kindergarten. When local schools reopened, the first three weeks were all online. Sanchez’s schedule freed up after he quit his job at an engineering firm to focus on building his brand as a content creator, so Mya has been spending more time with him during the school week.  With online schooling at such a young age, Sanchez says, “You have to be the teacher.” The school provided a laptop and a dry erase board, but he’s having to translate the online instruction into real world lessons, something he has no experience with. It can be frustrating. Like Mya, he’s having to learn as he goes.

School has since returned to in-person learning, and Sanchez says Mya is making the transition well. Both of them already have plenty of practice dealing with life’s unexpected forks. Whatever comes next, they’ll figure it out, together.


Follow Anthony Sanchez
TikTok: wheelchairpapii
Youtube: Behind The Chair A Sanchez
Insta: @wheelchairpapi

It Was Going To Be A Great Year
New York City

Yannick Benjamin and George Gallego had big plans for 2020. The longtime friends and collaborators on the Axis Project, an adaptive fitness and community center in New York City, were finally in the home stretch of launching their dream restaurant, Contento. The opening was set for late April and everything was going smoothly.

Yannick Benjamin and George Gallego planned for a spring opening of their full-service, wheelchair-friendly restaurant. Eight months into the pandemic, it looks like they will soon be able to open for takeout and delivery.
Yannick Benjamin and George Gallego planned for a spring opening of their full-service, wheelchair-friendly restaurant. Eight months into the pandemic, it looks like they will soon be able to open for takeout and delivery.

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Then COVID hit. In early March, Benjamin (“2017 People of the Year,” NM, January 2018) started to feel lethargic, but didn’t think much of it at first. Then he began to feel worse, similar to how he would when a UTI was brewing. A day or two later, he woke up nauseous and shivering like he’d slept outside in the middle of winter. “It definitely no longer felt like a UTI, he says. “It was something completely different.”

His fever rose to 101, 102, and he spent five days going from bed to couch and back again. He got a telehealth appointment with his doctor, who confirmed that he likely had COVID, but told him to stay put for the time being. Then his wife got sick too, and within two days, she lost her sense of taste and smell; Benjamin’s went soon after. Fortunately, Benjamin, a fit 42-year-old with an SCI at T6, says he never developed a bad cough, shortness of breath or any other respiratory symptoms. He felt terrible for about two and a half weeks, followed by another week or more of slowly improving symptoms. By the end of the first week of April, he and his wife were finally able to get in for a COVID test, which confirmed that they no longer had the virus, as well as an antibody test, which confirmed that it had indeed been in their systems.

A week later, Benjamin fractured his femur while doing his morning stretches. He went to the emergency room and underwent surgery the next day. It was a spring from hell, yet Benjamin, a sommelier, still considers himself lucky. He works for a private club that has weathered the pandemic better than the vast majority of New York’s dining and drinking establishments. “Every day, there’s a great restaurant that we’re all familiar with, that we all respect, and they’re closing,” he says. “I don’t know what the future for the hospitality industry is.”

Uncertainty also clouded the future of Contento and the Axis Project. The dream behind Contento was multi-fold: to open a quality restaurant, but also to cater fresh, healthy meals for the Axis Project members and provide workshops and other training opportunities for wheelchair users to gain experience in the restaurant industry. “It made sense for one to feed off the other, literally,” says Gallego.

The pandemic hit both establishments hard, but they’ve managed to survive. Gallego and Benjamin hope to open Contento in November for a trial run of takeout and delivery.

Despite shutting down their physical space entirely, Axis has managed to find opportunities in the chaos. The organization needed to reduce overhead anyway, and the pandemic significantly reduced commercial real estate values, allowing them to secure a new space with cheaper rent that’s also closer to Contento.  Their clients’ insurance companies have allowed them to switch to virtual programming, letting the organization keep its head above water. Members can tune in to accessible workouts, cooking classes, mental health workshops and even follow a physical therapist as he goes for daily walks around the city. “We have been able to engage more people virtually than we did in our space,” Gallego says.

As they work on building out their new location for whenever Axis is allowed to bring members back, they’re installing cameras so that they can live-stream classes. They hope this type of hybrid approach can reach more of their community than ever.


Follow Yannick Benjamin and Axis Project
Insta: @yannickbenjamin
Facebook: TheAxisProject

People Helping People
Houston, Texas

United Spinal Houston delivered PPE supplies to 500 wheelchair users in its service area.
United Spinal Houston delivered PPE supplies to 500 wheelchair users in its service area.

Early in the pandemic, the phones started ringing at United Spinal Association of Houston. “It immediately became clear to me how unsafe people were feeling,” says Rafferty Laredo, the chapter’s executive director. Members had lots of questions, but he had few concrete answers. One thing was clear: No one had enough personal protective equipment.

So Laredo got to work. He had a random contact at Baker Hughes, a multi-billion-dollar energy services company based out of Houston, and cold-called them.  Baker Hughes had access to vast quantities of masks and hand sanitizer that it had been sending to hospitals, but, Laredo says, what was happening in the disability community “was very much, out of sight, out of mind.” Laredo asked for PPE, and Baker Hughes delivered some 30,000 masks and dozens of gallons of hand sanitizer. After more searching and calling, Laredo was able to find an organization that could donate large amounts of disposable gloves.

With these supplies, Laredo and the staff at United Spinal Houston were able to put together over 500 boxes of masks, gloves and hand sanitizer. The next problem was figuring out how to deliver it all. With staff and volunteers stretched thin, they started slowly, delivering maybe 20 boxes a week. A breakthrough came when Laredo connected with the Houston Mayor’s Office for People with Disabilities, which leveraged the Metro public transit system. “Their drivers were mobilized with as many kits as they could possibly put into their vehicles, and they drove for eight hours straight,” he says. Metro was able to get the remaining 400-plus boxes out into the community in a single day.

Angie Square, a member of the Houston Chapter, had a kit delivered to her home, even though she lives about 20 miles outside public transport’s normal area. “They’re just so giving and genuine,” she says of Laredo and Wes Holloway, the program manager for the Houston chapter. “Anything you need, they’re right there.” Square had been running low on gloves, the result of her DME supplier running out of stock, plus she didn’t have any masks for her caregivers. “The kit was so helpful,” she says. The PPE kit had more masks than she needed, so she ended up sharing with a friend of hers, a polio survivor, who lives in the area.

That kind of networking helped bolster the chapter’s efforts to expand its reach and visibility. In all, the chapter added about 500 members through its PPE efforts. “I’m hoping that our expanded membership becomes a very quick lifeline whenever the next disaster hits,” says Laredo.

A Little Goes a Long Way

Helen Whitcraft, a 71-year-old retired school teacher and part-time wheelchair user due to a spinal stroke, had recently moved into “a nice little house” that she’d built in Fredericksburg, Texas. She’d made the move to be closer to her daughter and grandkids, and had planned to supplement her meager retirement income with substitute teaching. When the pandemic shut schools down, she applied for and received a $500 relief grant from United Spinal Association. “It was wonderful,” she says. “I appreciated it so much because it helped a great deal.” Her house was new, but she still had a few access needs — like concrete ramps in the garage and out onto the patio and making a few doorways wider — that the grant allowed her to pay for. It’s the first time since her 2014 injury that she’s lived in a fully accessible home.


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