Mark Adrian Richardson, known by his friends as “Spanky,” has enjoyed an uncomplicated life. Spanky, 52, has an infectious sense of humor and a zest for life. He’s the same height as actor Kevin Hart, 5’ 4”, and is quite the showman at local karaoke joints. Spanky loves his one-bedroom dwelling in the Park Place, senior Community Apartments in the Central West End. Because of its location, he can easily get to the library, the grocery store, the movies, or to nearby Forest Park.
None of these activities seems spectacular until you consider that Spanky is among the almost 50 million Americans grappling with disabilities. He doesn’t know the technical term for his malady, but he’s had more than 53 operations since childbirth to correct his webbed fingers and toes and other internal, cranial and physical complications.
Whatever condition he has, Spanky has learned to navigate the challenges. Growing up in Walnut Park and attending special-needs classes in public schools, he got used to being the butt of cruel childhood jokes. He said his godfather Jackie Rivers and his Uncle Marvin looked out for him. Spanky attributes his love of song and dance to his late uncle.
He still remembers and lives by the advice Marvin gave him when he was young: “You have to please yourself first. No one else is gonna please you.”
Although Spanky may fit the profile of a disabled person, he wishes people would see him beyond his limit.
“It’s hard because everybody looks at me as if there’s something wrong, and I hate that,” he said. “I get all kinds of comments from strangers about my hands and the way I look, but I figure, ‘Hey, I’m happy with me, so you ought to be happy about me, too.’”
After leaving his mother’s house some 20 years ago, Spanky got a janitorial job at a place in downtown St. Louis. He painfully recalled his supervisor firing him after saying his disabilities hampered his job performance. That was 10 about years ago. Today, Spanky survives off monthly disability checks and frugal living. Yet, after so many painful operations and other setbacks, he said he has found happiness in a simple life.
All that changed when the coronavirus pandemic struck the country. Suddenly, leaving the house, getting proper healthcare, or hanging with friends became problematic. For someone who thrives around people, Spanky said the long weeks of isolation was torture.
“I couldn’t do nothing I liked to do,” he said. “The only thing I could do was go to the grocery store or stay home and eat.”
Spanky doesn’t suffer alone. As deadly and devastating as the virus is among all Americans, it has a greater impact on people with disabilities. According to the National Center for Health Statistics, adults with intellectual or developmental disabilities are more likely to die than their nondisabled peers from pneumonia or other respiratory diseases that are frequent complications of COVID-19.
Disabled individuals comprise 29.1% of Missouri’s population compared to 25.6% of the total U.S. population, according to the Centers for Disease Control and Prevention (CDC). The definition of “disabled” is vast and wide but includes intellectual or physical disabilities such as cerebral palsy, epilepsy, autism, brain or spinal cord injuries and a host of other impairments. The CDC, however, lists some shared difficulties among the disabled such as walking, climbing stairs, concentrating, remembering, making decisions, doing errands or shopping alone, dressing or bathing and visiting hospitals or doctor’s offices.
Spanky receives aid from a caregiver but he hasn’t seen her in weeks. He said she had to quarantine herself due to a close relative of hers contracting the virus. His situation is not unique. Thousands of disabled and elderly people are going without healthcare due to the virus. Some patients fear catching the virus from caregivers and refuse service. Work stoppages and budget shortfalls have added to the decrease in caregivers.
Last month, Politico highlighted a survey of more than 1,000 home health agencies in all 50 states. The survey found that “more than half had laid off staff — and 96% reported that at least some patients refuse services during the pandemic.”
It’s a precarious time for disabled and elderly people who reside in long-term care facilities. In June, the New York Times reported that more than one-third of COVID-19-related deaths nationwide were linked to long-term care facilities. At the same time, the Missouri Department of Health and Senior Services (DHSS) reported that 222 Missouri long-term care facilities reported at least one case among staff or residents. More than 300 residents of nursing and assisted-living homes in St. Louis County alone died of the disease, and more than 1,400 others have been infected.
A recent bout with diarrhea and a slight fever convinced Spanky that he, too, had been infected. He had no idea where to go for testing until a friend took him to one of Affinia Healthcare’s testing sites. Dr. Kendra Holmes, senior vice president and chief operating officer with Affinia, said the company has placed special emphasis on providing services in the city and county for the disabled and other underserved populations because of their unique challenges.
“Transportation is a huge issue,” Holmes said. “That’s why we wanted to do mobile testing so we can go where they are. The main challenge is that they often don’t have the mental or physical capacities to follow CDC requirements. They may not be able to wear a mask or social distance or wash their hands appropriately. That’s why that population is so vulnerable and why we need to make them a priority.”
In April, the U.S. Department of Health and Human Services (HHS) awarded almost $1 billion in grants to help meet the needs of older adults and people with disabilities. Still, advocates for the elderly and disabled are hoping for more funds in Congress’ next rescue package.
For now, Spanky is just anxious to get back to normal life. He said the Affinia rep who called to give him his test results made him extremely nervous.
“When she asked, ‘How I was doing?’ I thought, ‘Oh, oh, here it comes. I’m coming home, Elizabeth,’” Spanky laughed, doing his best Fred Sanford impersonation. “Then she said, ‘It’s OK, you’re negative. It’s cool.’”
Spanky has been back to his favorite karaoke spot, even though distancing and sanitation restrictions are heavily enforced. The center he attends daily for camaraderie and shopping trips has reopened after being shut down for weeks.
Oddly, Spanky said the COVID-19 scare has helped him in many ways.
“It made me stronger, wiser and made me have to do stuff on my own,” he said. “Yes, I have to watch what I do, watch the people I’m around and basically keep myself up. But it also helped me realize I can do it and I can’t give up.”
Sylvester Brown Jr. is The St. Louis American’s inaugural Deaconess Fellow.