‘We Need to Include the Disability Community’: On The Sidelines Of The Coronavirus Conversation

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Before the world rushed to stock up on protective masks and lock themselves home, 18-year-old Gracie Kenworthy was already used to taking protective measures against germs and bacteria.

She has seven diagnosed autoimmune diseases and several other underlying conditions, ranging from rheumatoid arthritis to gastroparesis to narcolepsy. Her initial interview date for this story had to be rescheduled due to a kidney stone related trip to the emergency room, something not entirely uncommon for her.

Add to it all: Kenworthy is one of many people with disabilities who are at higher risk of contracting the coronavirus.

She’s staying cautious, but she’s accepted this new sense of normal — seeing the rest of her family sporting masks and having her semi-weekly doctor appointments virtually. She’s more concerned with how the country is including people with disabilities in the COVID-19 conversation.

It’s a community that is largely overlooked even in the best circumstances, said Olivia Babbis, a public policy analyst at Disability Rights Florida, a Tallahassee-based advocacy group for Floridians with disabilities. Babbis is also a congenital double amputee, meaning in her case that she has no arms. She uses her feet to drive and accomplish other tasks.

On March 30, Disability Rights Florida sent a letter to Gov. Ron DeSantis to instill anti-discrimination protections for persons with disabilities in healthcare treatment or in life-saving medical care. This letter came in light of several other states’ discriminatory policies against people with disabilities in the case of ventilator shortages in hospitals, according to the Center for Public Integrity.

The Alabama Department of Public Health, for example, posted and later took down a state policy that said people with severe mental retardation may be poor candidatesfor ventilators if a hospital has low stock.

According to Babbis, Disability Rights Florida has received numerous calls from people with inquiries on food delivery services, since many are unable to go to grocery stores after many transit systems were suspended.

Other calls have been about troubles with the unemployment website, which can pose an issue for those who need assistive technology or for those who are visually impaired. She said some are calling about trouble paying rent due to a large number of layoffs, and eviction threats.

“We need to include the disability community when we’re planning for emergencies,” she said. “Or when we’re planning for anything, really.”

Kenworthy said she almost feels safer to go outside since everyone’s being more careful. But she said she felt upset when she saw Publix, for example, did not set aside a special shopping time for people with disabilities, even though it did for customers aged 65 and older, for first responders and for hospital staff.

Walmart also does not have designated shopping times for people with disabilities, while Trader Joe’s and Sam’s Club do.

Those shopping hours are convenient for Bill Hileman, 61, who goes grocery shopping with his wife Mitzy, also 61, one to two times a week. Their family of four all live with disabilities, but their sole income right now is one Social Security and one disability check coming in for Bill, who retired in August and is legally blind.

They applied for Social Security benefits for one of their 22-year-old twin sons, who are both on the autism spectrum, but were rejected. Bill Hileman said the process is difficult, so they decided to stop pursuing it.

Despite the circumstances, Bill Hileman said life hasn’t changed much for the family in light of the coronavirus.

They’re all homebodies, he said. So, they haven’t had to adjust to stay-at-home orders as much as other American families, with or without disabilities.

When it comes to school, Kenworthy said she felt betrayed when she learned colleges were transitioning to online learning, when accommodations weren’t being made for people with disabilities before.

Last fall, Kenworthy had to medically withdraw from Santa Fe College where she studied biomedical engineering. Although she had great grades, she missed too many classes for health reasons to pass some of them.

For 21-year-old Maddie Crowley, there’s concern about her continuing ability to safely attend her biweekly 8-hour doctor appointments at UF Health Shands Hospital when the nation’s facing an overwhelmed medical system. At Shands, she receives her medication for muscular dystrophy, which causes the muscles throughout her body to be weak.

So far, she said her team of doctors, who she’s been in good relations with since she was little, have been staying cautious and considerate. They are keeping themselves safe so they can keep her and her family safe.

Crowley’s 25-year-old sister Emma Crowley, who has the same type of muscular dystrophy as her sister, said her disability has helped her adjust to this new situation.

A lot of people with disabilities actually feel more prepared to handle this situation because of “crip time,” she said, which is the idea that people with disabilities are used to plans being tentative based on how they feel.

The older sister has been a patient advocate at UF’s Powell Center for Rare Disease Research and Therapy while completing her master’s degree in public health. She said she’s been watching the coronavirus on the news since it first appeared in China in November, so she isn’t as shocked about its dangers and rapid spread as most people.

She hopes people without disabilities would, “just step back a bit and recognize that people with disabilities have been facing situations like this for a long time. And maybe something can come from that. People can learn from that.”

About Lauren Rousseau

Lauren is a reporter for WUFT News who can be reached by calling 352-392-6397 or emailing news@wuft.org.

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