One minute at a time 

Wit­ness­ing the Impact: How does the pan­dem­ic affect dis­abled peo­ple and their caregivers?

5 minute read
For 11-year-old Andrew Sholl, who relies on licensed caregivers like his mom, life in the pandemic is especially challenging. (Photo courtesy of Maryanne Sholl.)
For 11-year-old Andrew Sholl, who relies on licensed caregivers like his mom, life in the pandemic is especially challenging. (Photo courtesy of Maryanne Sholl.)

Covid-19’s war on the world disrupted able-bodied people’s lives. Not being able to go to restaurants, movies, theaters, museums, or even travel to other states or countries are definite hardships. On a global and national scale, the Olympics were postponed, along with the NBA and NHL seasons.

But as bad as these problems seem, many people with disabilities, as well as their caregivers, would more than likely jump at the chance to suffer only these specific inconveniences. As the pandemic wears on, many of them endure remarkable hardships.

Asking why

In some cases, besides not having the ability to drive or walk, certain disabled individuals never understood why they could no longer go to work or go out to play. Moreover, many disabled people are more vulnerable to complications of Covid-19 because of their existing medical challenges, barriers to healthcare, or an inability to practice physical distancing because of the care they rely on. Disabled people and their caregivers in the greater Philadelphia area shared some of their predicaments with BSR.

Rachel Fishbein of Wynnewood, who describes herself as “special needs,” found the situation baffling.

“It was weird,” Fishbein said. “It was hard for me to understand why I was at home all of a sudden.” She worked at GET Cafe in Narberth as a dishwasher and cashier. It was the first job for which she actually received a salary, and in that respect felt like everyone else.

“I’m getting my second [Covid] shot in a couple weeks and then I’m going back to work,” she said.

She lives at home with her mother, and helpers assist her with daily activities, but many of them were disrupted due to Covid.

“I want things to go back to normal,” Fishbein said.

People in similar predicaments can’t wait for things to get back to the way they were before 2020.

Suddenly, a smaller world

For Maryanne Sholl of Havertown, it has been a horrible ordeal for her and her 11-year-old son Andrew, who is on the severe end of the Autism spectrum. His mother is also his caregiver. Andrew is somewhat non-verbal, so he uses Nova Chat, an iPad-like device users navigate with a touch-screen, to communicate (here’s a demonstration on YouTube).

Sholl explained that Andrew could not understand why he couldn’t go to school, the trampoline park, or the mall. Every day he kept communicating through Nova Chat that he wanted to go to school.

Andrew got depressed. “He stopped playing with his dog; he stopped playing with his brother; he stopped playing with his toys,” his mother went on.

This past September, he transferred to the White Clay School in Kennett Square, which caters to children with learning disabilities. His family chose White Clay because he could attend in person. He is still having a rough time because he wants to go back to the trampoline park. His mother said that she feels lucky compared to some other parents, because some children still have not returned to school.

Meanwhile, 24-year-old Anthony John Giacalone of Sanatoga, PA (just east of Reading) has not been able to go anywhere. His mother, Barbara Jean Giacalone, who is also his caregiver, said that he has cerebral palsy and hydrocephalus (a build-up of fluid in the brain). Prior to the pandemic, he went to an adult daycare center several times a week, which for him was like going to school. His mother also helped him stay physically active. He played football in the fall, he swam and competed in the Special Olympics in the winter, and played baseball in the spring.

“His whole world changed drastically,” said Barbara Jean. “Now we go nowhere. He’s immune-compromised.” Anthony basically understands that Mom won’t let him go to school anymore, she elaborated. Mom won’t let him do anything.

Nothing new

Many people with disabilities do understand the current risks, but life under social distancing is not much different from their ordinary lives. John Robinson of Honesdale (in the Poconos) is a caregiver for two paraplegic adults. He said that they barely socialized before the pandemic. The only difference now is that they are afraid to be around people because they're afraid of catching Covid.

Krissy Serpente, 37, of Bryn Mawr, who also has hydrocephalus, has a similar experience. She had no trouble with social distancing because she barely socialized with anyone before 2020. Her two older sisters, Danielle and Diana Serpente, are her caregivers.

“She went to music therapy before the pandemic,” said Danielle, “but that was all the socializing she did because she preferred to be with Diana and me.” Now she does music therapy via Zoom. Going out is challenging, because masks don’t fit Krissy’s face properly.

“A lot of patience”

A number of disabled people who do not need caregivers faced unexpected problems after the pandemic broke out.

Emily Franks of Northeast Philadelphia is hard of hearing, but she could communicate with people because she could read lips.

“When everyone had to wear masks, she couldn’t read lips anymore,” said her husband, Stu Franks. “Now it’s hard for her to communicate. She’s advocating for masks with windows so people can still show their mouths.”

Before the pandemic, Emily taught preschool. But when the children were allowed to return, she did not because of her weak immune system.

Everyone is suffering in the pandemic. Some of us are upset because our favorite restaurants and movie theaters have closed. We have to wear masks when we go out. We are spending more time seeing family and friends virtually than in person. But some of us, like the people who tell their stories here, face more serious challenges.

“It took a lot of patience,” Sholl said of handling her son’s care in the pandemic. “We did it one minute at a time, not one day at a time.”

Image description: A photo of Andrew Sholl, an 11-year-old boy with short dark hair. He’s lying peacefully curled up on his side on a yoga mat on a wood floor, his elbows bent and his cheek resting on his hands. He looks calmly at the camera and he’s wearing a black shirt and gray pants.

This article was supported through a collaboration with the Institute on Disabilities at Temple University and research funded by the Waterhouse Family Institute for the Study of Communication and Society. You can read more stories at www.temple.edu/instituteondisabilities/we-will-talk, made possible with generous support from the Independence Public Media Foundation.

Read more about BSR’s collaboration with the Witnessing the Impact project.

What, When, Where

Read more about BSR’s partnership with Witnessing the Impact. And visit a sister project, We Will Talk About These Days, for a variety of interviews by and with disabled people about life in the pandemic, free to access online.

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