Holland woman, and others with disabilities, faced enhanced challenges during COVID-19 pandemic

One of Elizabeth Ferry’s favorite ways to spend time is by playing Nintendo’s Animal Crossing: New Horizons, a social simulation video game played in real time.

Truth is, Ferry, 42, has seldom left her parents’ Holland Township home since 2020, when the COVID-19 pandemic took hold. She plays Animal Crossing with other aficionados of the game online.

“I’ve kind of got used to not going out,” says Ferry, who has limb-girdle muscular dystrophy and uses a wheelchair. 

Even before the pandemic, she was using technologies like voice-to-text and an on-screen keyboard to work from home, as a virtual assistant for a company that schedules repairs for restaurants nationwide. Standard vehicles can’t accommodate her chair, so even before her parents, Dennis and Mary, used retirement savings to buy an accessible mini-van a few years ago, most of Elizabeth’s social life had moved online.

But the highly transmissible coronavirus ratcheted up concerns: Going out — and exposure to people who had been “out” — morphed from being merely inconvenient to being potentially deadly.

“Except for my aides coming in,” Ferry says, “it was pretty much isolation for me and for my parents.”

Isolation necessary, but painful

“It’s the little things” she used to do that she says she misses most: browsing at bookstores, motoring through the shopping mall, doing her banking in person.

For those with significant and multiple disabilities, the pandemic has presented a sort of “triple jeopardy.” They face poorer outcomes from the virus itself. Access to routine health care and rehabilitation services has been reduced. Finally, people with disabilities, perhaps more than people without disabilities, experienced adverse social impacts from efforts to stop the spread of the virus.

Though most people have begun referring to the pandemic in the past tense now that vaccines are readily available and mitigation restrictions are being lifted, people with disabilities remain cautious, knowing that variants of the virus could crop up at any time.

Ferry’s progressive condition, which has taken away control of her limbs, diminishes her ability to breathe, and she uses a BiPAP machine to support her breathing when she’s not speaking. The danger of contracting COVID — which can also diminish respiration and sometimes necessitates intubation — was so great for Ferry that she and her family couldn’t take any unnecessary chances for exposure.

Caregivers are essential

She requires help with transfers, bathing, dressing, toileting, and feeding, and qualifies under a Medicaid Waiver program for 70 hours of aide care per week. 

To minimize her outside exposure, Ferry hired her boyfriend of six years to work as one of her aides, but that changing role caused their relationship to fray. They eventually broke up.

Even with masking and other precautions, Ferry said that she — like other people with disabilities she’s met in online forums — lived in fear during the pandemic that her aides would get sick and quit, or just quit, and she would be unable to replace them.

Many service workers left the labor market during the pandemic — when supplemental funds from the federal government were available — rather than risk getting the virus themselves.

But Ferry considers herself supremely fortunate. Two aides — Anna and Diamond — have continued working for her throughout the pandemic. Both contracted COVID at different times, but the Ferry family remained unscathed. Anna even learned to cut hair, as Elizabeth couldn’t get out to a salon.

Ferry fondly recalls the afternoon during the pandemic that she attended the wedding of a childhood friend — online. 

“I felt awkward, because who knows the etiquette for an online wedding?” Ferry said. Do guests dress up? When is it OK to speak? What’s the best way to send a gift?

It was a different sort of wedding for a different time, but, as Ferry emphasized, “It was still really special.”

Until vaccinations became available in March 2021, Elizabeth admits, she was extremely anxious. Michigan made the earliest vaccines available only to older people, so she didn’t qualify. By having her mother drive her to a pharmacy just over the state line in Ohio, where the rules were different, Ferry was able to be vaccinated a month before she could have been in Michigan.

Ferry and her parents returned to Ohio again at the end of March — their first pleasure trip in the two years since the pandemic hit — to visit family in Columbus.

“It feels really good to be less confined,” Ferry said.

This article is a part of a year-long series exploring the state of West Michigan’s growing disability community. The series is made possible through a partnership with Centers for Independent Living organizations across West Michigan.