JOHANNA SCHOENECK ENTERS her house through the basement door now. That was the first change the coronavirus wrought.
She works second shift at a group home, where she’s a direct support professional and helps to care for people who — like her — have intellectual and developmental disabilities. She’s on the clock from 2 in the afternoon until 11:30 at night most days, so it’s almost midnight by the time she’s back at her house in Cogan Station, on the outskirts of Williamsport, Pennsylvania.
The night sky doesn’t have much to compete with here — it’s just a dark, velvety blanket over the 12 acres of her family’s land. She and her two older sisters used to pretend they were Olympic stars on those acres, some 25 years back. They’d haul planks of wood, which became pretend balance beams. They’d propel themselves as high as they could on a swing set, then leap, a creative reimagining of a long jump. Before she’d go on to be a Special Olympics athlete herself, before she’d travel to places like Athens, Greece, to participate in the global Special Olympics World Games — the biennial competition for athletes with intellectual disabilities — she imagined herself as an Olympian here, on this stretch of grass, in the middle of Pennsylvania.
She’ll pause sometimes, on these nights, look up and think how beautiful all those stars above are. A breath amid such craziness.
Still, the coronavirus snakes its way through the country, and so she comes home through the basement door. She sprays her keys with disinfectant. She sprays the doorknobs. She wipes down her shoes, then her backpack. She strips off the clothes she’s worn all day and deposits them in the washing machine. She grabs a towel she leaves out for herself every night, sprays the buttons of the washing machine she touched, then beelines for the upstairs shower.
But because of what she does, and whom she does it for, and how she does it, the threat of the coronavirus looms, ever present. For here is the heart of the dilemma for people with intellectual and developmental disabilities in the time of this pandemic: They are at once more vulnerable to the worst of this virus and less able to escape its clutches.
They’re a high-risk population, according to the CDC, more in danger of contracting pneumonia and influenza; more likely to have hypertension and heart disease, diabetes and lung disease. At the same time, some 1 million people across the country use home- and community-based services, many relying on people like Johanna in their own homes or group homes for help to simply live their lives. Hers is an intimate work. Not 6-feet-apart work. Not socially distant work. That means that the scores of people who need to avoid social interaction the most are the same ones who can’t avoid social interaction — indeed, must have it, often to eat and bathe and take medication. To survive.
Johanna always considered herself to be an essential worker. What is an essential worker if not someone who puts medicine in your feeding tube and helps you shower when you can’t do it on your own and sits by your side before a CT scan because it’s the only way you can keep calm? What is an essential worker if not someone who is in the business of survival?
But she’s not an EMT. Or a police officer. Or a doctor. So she always figured her essentialness was more theoretical, less practical. A break-in-case-of-emergency essentialness.
“I’m an essential worker,” she thought in the not-so-distant past. “But that’s only when the zombies come.”
The zombies came.
JOHANNA IS 34 and lives in her childhood home with her parents. The acres of field she passes from her car to the basement door on those nights after work are the same acres where she and her sisters played and daydreamed growing up.
Of course, coming home through the basement door is not the only way the coronavirus has reshaped her life. She’s a global messenger for Special Olympics Pennsylvania, an ambassador helping to spread awareness to the community, but now she attends her state chapter’s board of directors meetings via Zoom. And she competed in this month’s Summer Games for Special Olympics Pennsylvania virtually, the spread of COVID-19 upending this live sporting event like all live sporting events. Special Olympics has encouraged its athletes to post clips showcasing their training, trying to sustain a lifeline, a connection, for those who rely on it. Johanna has participated; it’s a pursuit she knows well.
She gave some fleeting thought to sitting out the coronavirus on the sidelines. Because this is the same childhood home, and these are the same acres, and her parents are now in their 70s — her father has rheumatoid arthritis and is on immunosuppressant medication — this whole endeavor, working through the coronavirus pandemic, is especially fraught.
That fleeting thought didn’t take.
One of the first years she spent on the job as a direct support professional, a resident of the house grew so attached to Johanna that a local hospital gave her special dispensation to accompany him for all his medical testing. He could stay calm, bear the sensory overload and strangeness of things like CT scans, as long as she stayed nearby. And when he died, later that same year and with no family present, Johanna helped plan the funeral.
She had the family she was given and the family she created. What else could she do, she figured, but find a way to do right by both?
One night early on in this crisis, as sports organizations, including Special Olympics, shuttered and colleges sent their students home for the year and the millions who could stay home from work did so, she sat in her supervisor’s office and looked at the wall where a few photos of the residents hung. She was at the group home late that day, taking an overnight shift and setting up a bed in the office where she sleeps, when she looked at the pictures of the people she provided care for every day.
“I’m not here to treat them,” she thought that night. “But I’m here to keep them safe, and that’s my mission. I’m going to complete that mission no matter what.”
HERE ARE THE milestones that doctors insisted Johanna Schoeneck would, no matter what, never realize:
Live beyond six weeks.
“I was a mess when I was a baby,” she says. “A hot mess.”
When she was born, doctors looked at the webbing of her neck and the spacing of her eyes and posited she might have Turner syndrome, a chromosomal disorder that can cause a host of medical and developmental issues — heart problems, kidney problems, hearing and vision problems — until genetic testing ruled that out. Then they hypothesized Noonan syndrome, which also portends a slew of health complications — heart disease, bleeding disorders, skeletal malformations — until they eliminated that diagnosis too. They determined that Johanna’s enlarged liver spelled disaster, until they realized she didn’t have an enlarged liver at all. Doctors discovered a hole in Johanna’s heart when she was 11 months old and determined she had a small rib cage — a byproduct of heart disease — which had made her liver look unusually big by comparison. In the end, by the time she was 4 years old, she had undergone six surgeries — four operations on her eyes, one on her heart and one to repair damage from her open-heart surgery.
Before the surgical team wheeled her in for one of her eye surgeries, Johanna, having just chosen her flavor for anesthesia — sometimes it was bubblegum, other times banana — sat on the gurney and looked at her mother, Jo Schoeneck. “Mommy, I be brave,” she told her. “But I not happy.”
But she was talking, wasn’t she? Even if she was often hard to understand. Even if her mother and two older sisters, who spent all their days with her, had to act as pseudo-translators. And she was walking, wasn’t she? Even if she was 2 by the time she finally took her first steps. Even if her mother was driven to tears when she found Johanna standing in her crib, because that was the first sign she could even go on to maybe walk. And she was here, wasn’t she? Alive — and if not well, then getting well — far past the doctors’ original grim timeline. Even if those same doctors couldn’t, and still can’t, pinpoint the exact cause for Johanna’s sundry medical issues. Even if all they can offer is that it’s not Turner, not Noonan, but something nameless, or at least something as-yet-to-be-named. And so they settled on being unsettled.
“The doctor finally said to me, ‘Someday they will probably discover what all of this is and give it a name,'” Jo says. “‘But there just isn’t a name for it now.'”
Instead, the best they could do was treat Johanna symptomatically, shifting pieces in a jigsaw puzzle they’d never quite find a way to complete. Physical therapy and occupational therapy. Surgeries and medications. And before kindergarten, when Johanna was diagnosed with learning disabilities and visual-spatial disabilities, then eventually severe ADD, they shifted more pieces, addressed more symptoms — with treatment like Ritalin and speech therapy.
Johanna made it to kindergarten, then elementary school, then high school, then college for her associate’s degree — all triumphs where once doctors had guaranteed defeat. But she was also different from the other kids with her in kindergarten and elementary school, high school and college, so she became their target.
The girl who went on to become a Special Olympics athlete in equestrian, bocce and running avoided sports altogether as a child because, she figured, did she really want to be where she wasn’t welcome, try to join a team that didn’t want her as a teammate? She avoided the cafeteria in high school because she’d arrive at an empty seat at a table and be told that seat was saved, taken.
She couldn’t avoid the bus home in middle school, when a group of girls threw oranges at her, pelting her until she was drenched, her jacket covered in juice. She got off the bus that day and her mother was furious — at the juice, at the bullying, at all the meanness that had come before — and swore she was going into the school to set this right. Johanna begged her off. She wanted to handle this on her own, go into the vice principal’s office to explain what happened and that she wasn’t OK with it. She didn’t have any particular punishment in mind but did know she didn’t want that to happen again.
Before she was anyone else’s caretaker, Johanna learned to be her own.
If she’s especially good at her job now, it’s because she’s not just helping to take care of people with intellectual disabilities. She’s a person with intellectual disabilities doing the work.
“I feel like I’m better able to understand them,” she says. “It’s not an aura. Or an energy. But I’m able to pick up, Maybe this is where they’re coming from.”
THE GROUP HOME where Johanna works in Williamsport is part brick, part vinyl siding. There’s a little front porch and a little back porch, and when she’s standing in the kitchen, there’s a park she can spot through the window across the way. She knows the neighbors. It’s a house like any other house, a neighborhood like any other neighborhood, and really, that’s the point, for the residents of the group home to be a part of the community like any other part of the community.
“The inclusion revolution,” says Johanna, nodding to the Special Olympics campaign of ending discrimination against people with intellectual disabilities.
The idea is as simple as it is self-evident, advocates say. Everyone, including people with intellectual and developmental disabilities, thrives at home and in their home community. Nursing homes and institutions, long-term care facilities, serve no one’s best interest. That’s true now more than ever, when the coronavirus is ravaging nursing homes everywhere, anywhere, an estimated third of the country’s COVID-19 deaths taking place in the very sanctuaries meant to serve those who are elderly and have disabilities — people like Johanna; people like those she provides cares for in the group home. A pandemic within a pandemic, stacking on top of each other like nesting dolls.
Rebecca Cokley, a disability rights activist and the director of the Disability Justice Initiative at the Center for American Progress, looked up at the beginning of this crisis and the first fatalities she saw attributed to COVID-19 were people with disabilities. An advocate in Georgia; a gubernatorial appointee in Louisiana. She knows these are anecdotal, not statistics that tell the story — though those numbers too are devastating: at least 49,000 deaths in congregate settings like nursing homes and institutions, according to the Autistic Self Advocacy Network — but they tell a story, she believes.
“We know that, frankly, our lives are not as valued as people without disabilities when we go into the hospital,” says Cokley, who has disabilities too.
That devaluation manifests in ways that are explicit, insidious, Cokley says. She herself was in the middle of a C-section for her second child when the anesthesiologist joked to the obstetrician, “While you’re down there, why don’t you go ahead and tie her tubes?” Cokley recalls. “Folks like her don’t need to have any more kids.”
It is institutionalized too: Take the state of Alabama, where rationing guidelines for medical care called out “severe or profound mental retardation” as potential justification to deny sick people, including children, access to a ventilator. Alabama agreed to disavow its policy in the face of complaints, but other states — Kansas, Tennessee, Washington — offer similar guidelines and face a similar barrage of legal challenges.
But this pandemic did not give rise to inequities in the medical system so much as unearth them, shove them out into daylight. That is to say, the problems aren’t new but entrenched — problems that existed before the coronavirus and will exist after it too.
There’s not enough training, says Dr. Alicia Bazzano, the chief health officer for Special Olympics, who points to the 80% of the country’s health care professionals who have not been trained on how to treat patients with intellectual disabilities, period, nor those testing positive for COVID-19 right now.
There’s not enough communication, says Julia Bascom, executive director of the Autistic Self Advocacy Network. She says there’s a dearth of accessible information and plain-language materials in general, and now in particular, on why public places are shutting down, on why everyone must wear masks, on why washing hands is so critical.
There’s not enough nimbleness, says Nicole Jorwic, the senior director of public policy at The Arc, a human rights organization that advocates for people with intellectual and developmental disabilities. Hospitals have closed their doors, understandably so, necessarily so, to visitors as a means of infection control. But with that one small act, they’re often not distinguishing between visitors and support persons. That’s a precarious cliff to scale every day — especially, she points out, because too many health care professionals are predisposed to looking past a patient with disabilities, rather than to the patient, when it comes to making decisions on how to provide medical care. And it’s a really precarious cliff to scale today, in the throes of a pandemic.
Jorwic’s brother has autism. Last year, on his way home from a Special Olympics basketball game, he slipped getting out of the car and broke his leg. It was February in Chicago; it was icy. Her brother is 6-foot-3 and more than 300 pounds, and Jorwic and her family couldn’t help him get up, so they had to call an ambulance. Had Jorwic not been there — had she been in D.C., where she lives now, rather than visiting Chicago, where she grew up — she says her brother would have ended up in a nursing home that day. Instead, she was there, able to speak when her brother couldn’t, because he doesn’t use his voice. Able to show the nursing staff that he could, in fact, answer yes-or-no questions if only they’d create a board for him. If he fell now, if he came down with COVID-19 now, she wouldn’t necessarily be there, nor be able to stay by his side. If he needed care now, he’d end up in a nursing home. That’s the nightmare scenario, nursing homes and long-term care facilities — the start and end of a dangerous, vulnerable loop, Jorwic says. At all times but especially today.
“They’re hotbeds right now,” she explains.
Community Services Group, the company Johanna works for, oversees residences in 13 counties throughout Pennsylvania. Among its 350 residents, five have tested positive for the virus; of roughly 1,000 staff members, 18 have contracted it. The company has been fortunate, says Peg Van Schaick, CSG’s vice president of intellectual and developmental disability services. Spread has been minimal, and where personal protective equipment has been needed, it’s been provided. (Though Cokley laments that most direct support professionals report much grimmer availability to critical supplies. “I have yet to hear of any folks that have enough of what they need,” she says.)
But in many nursing homes, infections have run rampant. Bascom, from the Autistic Self Advocacy Network, says she’s seen some congregate settings report 50% of residents falling sick.
So they are all pushing Congress to increase funding for home- and community-based service programs, funding that hasn’t come their way yet even as relief packages 1.0 and 2.0 and 3.0 have passed. They need the money, they say, to shore up a home- and community-based service system that was teetering before this crisis and is floundering now, so people with disabilities don’t end up in nursing homes right when they’re most dangerous. They need the money to provide PPE where there is so little to be had — for the direct support professionals, providers like Johanna.
“These folks are essential workers,” Cokley says. “But often when people think about essential workers, they’re thinking about doctors and nurses, or firemen and police. They’re not thinking about the people who come into homes every day and help people roll over in bed so they don’t get bedsores.
“There’s a real need to expand what we’re thinking about because those are lifesaving measures.”
Direct support professionals are essential in deed, but often not in name, and so the uptick in PPE that has flowed to doctors and nurses and front-line workers has not flowed to them. They are essential in deed, but not in name — at least not yet — because too few people have Johanna’s power of imagination. Reimagination, really. Johanna and direct support professionals were essential workers before the zombies came, even if she didn’t fully realize it then, and will be essential workers once the zombies leave too.
JOHANNA STOOD ON A ROCK nearly a decade ago, barely 600 feet north and west of the Acropolis, taking in the full sweep of Athens around her, and considered the way the boundaries of her world had stretched, swollen, let in new possibilities. Bigger possibilities.
The Apostle Paul once stood in this same spot, Areopagus — Men of Athens, I perceive that in every way you are very religious — and Johanna says she was left awestruck by the weight of this history because she is religious too. When she was young, still a target for others because she was different, she didn’t pray for the bullying to stop, her mother says, but rather for the bullies themselves. “I should pray harder for them,” she told Jo one night, “because I think they hurt more than me.”
Johanna had traveled to Athens, her first venture outside the United States, for the 2011 Special Olympics World Summer Games. She stood in the Panathenaic Stadium watching Stevie Wonder — Stevie Wonder! — croon to thousands at the opening ceremony. She breaks out in song now, nearly 10 years later — You can feel it all o-o-o-ver — because she’s always loved singing, loved singing that song in particular. She sang it when she was in chorus in high school, one of the few times she was a part of something rather than cast outside of it.
More than Stevie Wonder serenading her with the song she once performed herself, more than walking the same rocky terrain Paul once trod, more, even, than the two bronze medals she took home in equestrian, those games were a stamp of something, a permission. She could travel internationally with her team. She could compete in sports where once she sat on the sidelines. She could find community. She could dream without constraint.
“It was really an awesome sense of independence,” she says.
And so she does, still, dream without constraint. She is saving up to get her own place. She hopes to return to school to one day get a license for counseling. She continues to work in a pandemic, opening up to the idea of her own essentialness, waiting for others to do the same.
Her group home, like hospitals and nursing homes across the country, has had to shut its doors to visitors. Johanna says some family members have dropped by to leave care packages on the doorstep, or to look in through the window at their loved ones. Johanna fills in the gaps, helping the residents connect with their family on video chats or acting like family in the absence of one. She helps them wade through the morass of news about the virus, helps them grapple with their place in a pandemic, because it’s her place too.
Years ago, long before the coronavirus swept up the country, one of the residents of the group home looked at Johanna and paused for a moment.
“You know why I like you?” that resident asked. “You get me.”
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