Steve Mellon
smellon@post-gazette.com
Kate Giammarise
kgiammarise@post-gazette.com
May 19, 2020
The imminent reopening of Western Pennsylvania’s economy is good news for many businesses and workers. But for people with disabilities, already facing unique challenges in the age of COVID-19, it’s a bit more complicated.
Many feel the risks to their health will only increase if they rush to join society in its march to some sort of normalcy. They’re often stressed and face mental health issues.
Take Alisa Grishman. For weeks, she sheltered in her Uptown home to avoid COVID-19. Six autoimmune conditions render her especially vulnerable to the virus. Given an opportunity, it would certainly kill her, she says. So she stayed put.
But one day in early May she simply had to venture outside. Ms. Grishman, 38, was scheduled for blood work and medical treatment at UPMC Magee-Womens Hospital. As the hour approached, she felt her anxiety rise. She made a list of the things she needed to take with her, including a mask and a large bottle of hand sanitizer, which she placed in the cupholder of her powered wheelchair. She had trouble finding a few items, and this further frayed her nerves.
Then she made coffee to take with her and it occurred to her she would be unable to drink it because she’d be wearing a face mask. Soon she was sobbing in a “full-on panic attack.”
“I felt so stupid and helpless,” she said. “I felt at that moment like I couldn’t deal with my life.”
Her roommate calmed her with a hug. “Just breathe, just breathe,” he said.
The stress Alisa Grishman feels during the pandemic oddly parallels the stress she experienced eight years ago, in the days and weeks after a gunman entered Western Western Psychiatric Institute and Clinic and opened fire, killing one person and injuring several others before being shot and killed by police.
Ms. Grishman, 38, worked at the institute at the time and, in fact, shared a workspace with Kathryn Leight, who was seriously wounded that day in March 2012. Ms. Grishman was stationed at a different location when the gunman entered, but when she returned to work in the days after the incident, she faced constant reminders of the horror that had occurred at the Oakland facility. Bullet holes in the walls were repaired, but the new paint didn’t quite match. The blood-soaked carpet had been removed; new carpet was slightly different. Armed officers were stationed at the entrance in case a copycat gunman arrived.
For Ms. Grishman, these reminders created what she calls “baseline terror” caused by the gunman. “The tiniest thing would set me off in panic attacks and that’s what this feels like now,” she said.
The cause of her stress today is COVID-19. Because she has Multiple Sclerosis and Crohn’s Disease and other health issues, the coronavirus could be deadly for her. She spends most of her time sheltered in her Uptown home to minimize her exposure. She can’t escape the anxiety. She’s had a number of panic attacks in the past two months.
“We’re constantly inundated with reminders that things are kind of awful and can get worse,” she said. “And we have no way of predicting if and when that will happen.”
People interviewed for this story were asked to recruit a friend or family member to shoot several pictures that could then be compiled into a collage to show where individuals were sheltering in place.
(Photo by Sean Guzek)
Ms. Grishman made it to her appointment at Magee, guiding her wheelchair on a sidewalk following Fifth Avenue in Oakland. The mile-long trip had its challenges. At one point she had to maneuver past a man smoking a cigarette — there simply wasn’t space to do so at a safe distance, and she couldn’t step off the sidewalk to get farther away.
Michael Haider has the same problem when he leaves his Kilbuck home for walks in his powered wheelchair. Mr. Haider, 35, has cerebral palsy and high blood pressure. Like Ms. Grishman, he feels especially vulnerable to the coronavirus.
People walking in pairs or in groups often are caught up in conversations and don’t see him coming. It’s up to him to maneuver his wheelchair a safe distance from others, most of whom are not wearing masks.
“It’s a sign people aren’t taking this seriously enough or they’ve decided the worst is over and we’ll be back to normal soon,” he said. “That really bothers me. For the mask thing to work, we’re all supposed to be wearing them. Even if it’s not totally protecting me, it’s a sign that, ‘Hello, this is still happening.’”
Mr. Haider worries that, in the rush to reopen, the concerns of people with disabilities will be ignored. “Nobody’s really talking about what this means for us,” he said. “Having a disability is part of being an invisible minority.”
Michael Haider is a social guy. He’s joined a men’s group that meets regularly at a Ben Avon coffee shop, and he’s active in a local Presbyterian church, where he occupies a spot near the front row during Sunday morning worship services. He’s a regular at weekly Bible study sessions.
Of course, that’s all changed because of COVID-19. The men’s group and church meetings take place remotely, and Mr. Haider watches on a computer as his pastor delivers live-streamed sermons on Sunday mornings.
At some point in the future, though, his church and other organizations will ease back into in-person get-togethers. Mr. Haider, 35, wants to join in, but he’s weighing the risks. Much depends on how his church and other organizations manage a return to normalcy. Cerebral palsy and high blood pressure render COVID-19 especially dangerous for him. He feels he can’t afford to contract the disease.
“What’s it going to look like when (the church) reopens?” he wonders. “I’m hoping to be able to go back under some scenario in which masks are involved.”
Mr. Haider has taken part in discussions among church leaders exploring ways to safely reopen. Creating safe distances between worshippers is key, he said.
“There’s a chance the first week I won’t come. I’ll wait to see what happens,” he said. “Then maybe I’ll try a week or two later. I would really like to find a way to return in person.”
(Photo by Joseph Angelellil)
Heather Tomko is conflicted about reopening.
“I think it’s hard for me on a personal level to hear that people are OK risking my health,” said Ms. Tomko, 31, of Whitehall. She has spinal muscular atrophy, a neuromuscular condition, and decreased lung capacity. Contracting COVID-19 could have serious consequences for her.
“I don’t want anyone to go without easy access to food or income because of the stay-at-home orders. I have empathy for [people facing that]. But I also have, you know, a real concern for me and my health. And I worry that the more things open up, the less careful people are going to be, and the more careful I’m going to have to be as a result. And that, it’s difficult knowing that I can’t control everyone else’s actions and choices, and as a result, I have to be very, very, very careful with my own. … There’s no easy solution. But I do really worry that when things open, people are going to think it means they don’t need to be careful anymore, and I know that’s not the case.”
The shift to virtual meetings and remote events is welcomed by Ms. Tomko. She hopes it continues after the pandemic.
“This is something that would make the lives of many people with disabilities easier overall. And it was something that people were really hesitant to agree to, before the pandemic. And now, [they] are much more open to it, because they’re forced to be. And so I hope that one of the outcomes, one of the positive things to look forward to is that some of this willingness to hold things virtually continues in the future,” she said.
Mark Steidl in his Highland Park home. (Photo by David Steidl)
Like other people, Mark Steidl, 25, of Highland Park, stopped going into the office for his job in March. Mr. Steidl, who has cerebral palsy, also transitioned to online instruction for classes he was taking at Community College of Allegheny County. He’s curtailed his social life and switched to online meetings for clubs at CCAC.
“Personally, I’m deeply disturbed when I hear all this talk about reopening the county as well as other areas of Pennsylvania,” he said. “I understand that people may be anxious to return to their normal activities, and so am I. … I know that personally I will still be in isolation for quite some time.”
Debra Stemmler has been thinking about aspects of life that have improved during the pandemic — “It’s the only way I can survive this thing,” she said.
Sidewalks are less crowded now, she said, and there are no lines at elevators. This is a big deal for Ms. Stemmler, 60, of Highland Park. She has skeletal dwarfism and a spinal cord injury and uses a powered wheelchair to get around. People are giving each other more space in public areas. And that includes public transportation.
“Have you ever ridden a PAT bus?” she asked. “It used to be hell, especially if you’re in a wheelchair. You have just one place to sit. People pack in around you, hold on to your chair, sneeze over your head, cough on you. There was absolutely no regard for space on those routes. It’s not the fault of riders. They’re just crammed in like sardines.”
She’s noticed a change during the COVID-19 crisis. Busses are cleaner now, she says, and less crowded.
“The other day there was one person in every other seat,” she said. “It was actually a pleasant ride. The bus didn’t smell like urine or vomit. It was clean. It was such a pleasant experience.”
She wonders why those cleaning procedures weren’t implemented earlier and, most importantly, if they’ll continue once the pandemic has passed.
(Photo by Debra Stemmler)
Debra Stemmler, 60, who has skeletal dwarfism and a spinal cord injury and uses a powered wheelchair, sees some positive developments in the response to COVID-19. Everything from food to medical supplies to pet products can now be delivered — something people with disabilities have wanted for years. Businesses are creating space that allows customers and employees to keep at least 6 feet apart. People with disabilities have long advocated for more room to maneuver wheelchairs in store aisles. Now it’s happening.
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Elaine Houston lives with a “low creep” of nausea, but the intense queasiness that struck late at night a few weeks ago was different. This was an “instant, hard-wall” of nausea, accompanied by severe pain. Ms. Houston knew exactly what had happened: One of her ribs had popped out and was jabbing her in the stomach.
Ehlers-Danlos Syndrome has weakened her body’s connective tissue. Joints frequently dislocate. Ms. Houston, 32, of East Liberty, says her body is “not completely together and not completely apart.” Her joints are halfway in, halfway out. Dislocations that would land most people in the emergency room are a regular occurrence for her.
But this rib dislocation near midnight during a pandemic was a bit of a problem. Medication that kept her everyday nausea in check wasn’t working this time. She tried using a vibrating roller to massage the rib back into place. That didn’t work. Normally, she would call her massage therapist or physical therapist to set the joint. During the pandemic, such close contact is out of the question. Ms. Houston was on her own.
Ms. Houston relies on therapists. In addition to massage therapy, she receives physical therapy to strengthen her body’s ability to keep joints where they are supposed to be. That’s not happening now.
By the next morning, Ms. Houston’s pain had subsided and the rib was finding its own way home. She may not always be so fortunate.
Ms. Houston’s health issues make her especially vulnerable to COVID-19. She’s wondering when she can return to her therapists. She’s weighing the risks of going through a public door, an elevator, a waiting room. Every week scientists learn new and often frightening things about the virus.
“I thrive on information and research and knowledge in order to make fact-based decisions,” she said. “I don’t have enough information. We don’t really know how (the virus) spreads. How do we stay safe?”
Living risk-free is impossible for many with disabilities because their personal care requires help from attendants who may visit several people each day.
Elaine Houston stopped using attendant care a few months ago. Attendants sometimes failed to show up and disregarded safety precautions, she said. Ms. Houston has Ehlers-Danlos syndrome, which results in loose and unstable joints, and other health conditions that put her at risk. Now she relies on her mother, Toni Houston, to help nurses provide 24-hour care.
It’s a challenge, Elaine Houston said. For more than six weeks, mother and daughter have been cooped up in a 700-square-foot, one-bedroom apartment in East Liberty. They’re joined by a service dog. “It’s cozy,” Ms. Houston said.
Her mother, who lives near Fishkill, N.Y., sleeps on a massage table.
Ms. Stemmler considers herself lucky. Her attendant sees only one other person so the risk of exposure is minimal. She feels the attendant’s presence is especially important during the pandemic. She can shower in her Highland Park home without assistance, but she won’t do it now unless her attendant is in her house. What if she falls and he’s not there to help?
“I’m terrified that someone will call an ambulance and take me to a hospital,” she said. “The risk is so high. You go into that door with a pre-existing disability and they make an assumption you need all kinds of help or medical assistance, that you’re someone of less value. They may not say that — it may not be in their minds formally. But the culture and stigma has locked us into that role of having less value.”
She voiced a concern felt by others — that medical equipment such as ventilators would be steered away from them.
“I’m oversimplifying, but the disability community has a contentious relationship with the medical community in the first place,” Mr. Haider said.
Hanna Bruesewitz in her Mt. Lebanon home. (Photo by Margo Chausse)
Robie Bruesewitz worries that if her 28-year-old daughter, Hannah, were to contract COVID-19 and need hospitalization, she wouldn’t be able to communicate with doctors and nurses about her condition and what was happening to her.
Hannah has a seizure disorder and is on the autism spectrum. She is nonverbal.
“[Hannah contracting the disease] is a big fear of mine, because she’s not able to verbalize anything, and of course, we wouldn’t be there to be able to advocate for her because they don’t allow anybody in the hospital with your loved ones. So, that is a big, big fear of mine. … She can’t verbalize anything or understand what they would be doing to her.”
Worries about access to care and rationing of care have been such a concern that Disability Rights Pennsylvania, a legal advocacy group, filed a complaint last month with the U.S. Department of Health and Human Services Office of Civil Rights to make sure people with disabilities are not discriminated against in accessing care during the pandemic. The group operates a hotline at 1-800-692-7443, Ext. 402, that individuals or family members can call if they are experiencing discrimination.
As Western Pennsylvania moves through yellow and then green phases of reopening, anxiety levels could rise in the disability community. One way to deal with this — as well as stress and social isolation — is by reaching out to others, especially those undergoing similar experiences, said Nancy Murray, senior vice president of Achieva, which provides lifelong support for people with disabilities and their families.
“Now is the time to do that,” she said. “There are people out there to talk to about your fears or concerns, not just how to make a mask. Don’t sit home and worry. Talk to people.”
Phone calls and video meetings are important tools. In many cases, Ms. Murray said, people using technology and social media have formed new friendships. “For people who tend to lead more solitary lives to begin with, they’re finding people they now have connections with. That’s a great thing that maybe will continue long after the pandemic.”
Libby Powers knew confinement and lack of personal interaction would be a problem. Her work as a research assistant at the University of Pittsburgh’s Human Engineering Research Laboratories relies on collaboration and interaction.
“I was proactive and decided to find a mental health therapist willing to see patients virtually,” she said. Ms. Powers, 35, was born with spina bifida and can ambulate short distances on foot but uses a powered wheelchair to move about the community. “I’ve also managed it by making sure I get outside at least every day. It may not be for long, but it’s good for me to get out and at least recognize the world is still there.”
Ms. Grishman has found a low-tech way of maintaining mental health. At home she’s placed favorite quotes, poems and pictures of the “Emergency Calm Cat,” a cartoon that offers advice. “Stay up on the news and facts, but don’t panic,” reads one. She misses her boyfriend — they’ve been apart since the lockdown — but has placed several pictures of him around her home.
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During a telephone discussion about the reopening of Pennsylvania’s economy and what it would mean for him, Johnathan Krupitzer paused and took a breath.
“On a personal note, I lost my grandmother last week to cardiac arrest,” he said. Mr. Krupitzer, 28, of Natrona Heights, has cerebral palsy. “I couldn’t go see her. My family had a funeral viewing for her and I couldn’t be there. I know I’m not the only one to go through that, who couldn’t say goodbye to a loved one.”
He’s hoping people take proper precautions during the different phases of reopening so that no COVID-19 flare-ups emerge and force further closures. For many, such closures are an inconvenience and an economic hardship. For others, it means a painfully lost opportunity to bid farewell.
Mr. Krupitzer watched the funeral viewing of his grandmother via live-stream, but it wasn’t the same as being there.
“At least I was able to have some closure,” he said. “But it wasn’t the closure I was hoping for.”
(Photo by Johnathan Krupitzer)
Johnathan Krupitzer, 28, who has cerebral palsy, misses his job as a greeter at Giant Eagle. Being cooped up in a Natrona Heights group home “drives me stir-crazy,” he said. “I’m used to doing things and going places, and all that has stopped. It’s hard for me to adjust.”
He wonders if the job will be waiting for him when he returns. “I think about that often. I love my job — the people, the co-workers. They say I don’t have to worry about it, but sometimes I do.”
He passes the time by producing a podcast called “Table Talk with JJ,” which he started in March. One recent episode dealt with depression. Another advised listeners how to treat people with disabilities.
COVID-19 has highlighted the strength of Pittsburgh’s disability community, a number of people said. Members are reaching out and helping one another.
While out on a recent shopping trip, Donna Ancypa Holmes picked up unsalted butter for her friend, Ms. Grishman. Ms. Ancypa Holmes has cerebral palsy but does not consider herself immunocompromised.
From her balcony, Ms. Grishman used a string to lower a bucket so she could haul up the butter. Attached to the bucket was a note that read, “It puts the lotion in the bucket” — a nod to a scene in the 1991 film “The Silence of the Lambs,” some of which was filmed in nearby Oakland.
“It feels good to be nice to each other,” Ms. Ancypa Holmes said. “But it’s also because the safety net is very tenuous right now. There are not a lot of extra resources to go around. People with disabilities are concerned they won’t be able to get groceries or the medical care they need, so they’re turning to each other to get answers to questions.”
Steve Mellon: smellon@post-gazette.com. Kate Giammarise: kgiammarise@post-gazette.com or 412-263-3909.
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