Novel coronavirus lockdowns touch something deep among our community. “Isolation isn’t new to me,” Loretta Claiborne, a Special Olympics pioneer and chief inspiration officer, said during “the Call to Unite,” a recent live stream unifying leaders around the globe. “I’ve dealt with it my whole life.”
She was speaking about things that people with intellectual disabilities have fought for generations: social marginalization, public ridicule, segregated education, inadequate health care. The covid-19 pandemic hasn’t lessened these struggles. It has, however, clarified that ending the pandemic of disease requires also ending the pandemic of division and inequality. Covid-19 is a viral threat that knows no labels and respects no social norms. Unless everyone is treated, the disease can’t be eradicated. No exceptions.
What our society looks like after this crisis depends on our collective understanding of the threats posed by inequity — and the work we do to address them. Let’s start by recognizing that people with intellectual disabilities are among those most vulnerable to the novel coronavirus. This is partly because about a quarter of adults with intellectual disabilities in the United States live in group homes. The risk of infection and death in these environments is staggeringly high. A recent study of group homes and similar facilities in New York City estimated that residents are around five times more likely than the general population to develop covid-19, and that those who get it are about five times more likely to die from it.
For a host of reasons related to being a medically underserved population, people with intellectual disabilities already suffer disproportionately from preventable disease, chronic pain and premature death. We have yet to resolve inequalities in our health-care system that are causing death, illness and emotional trauma to those who were already marginalized. Health-care providers and support staff must be trained to work with people who have intellectual disabilities — not just during the pandemic but all the time. This kind of training has long been lacking. More than 80 percent of medical students reported receiving no clinical training in the care of patients with disabilities in a 2009 study by the American Academy of Developmental Medicine and Dentistry. Health-care providers must know how to effectively communicate about covid-19 prevention, how to recognize symptoms and, more broadly, how to treat people with intellectual disabilities.
Equally, research to study the experiences of people with intellectual disabilities must be funded. What are the unique biological and epidemiological factors affecting their health? How are limited medical resources being distributed? Research and clinical supports for this population have been scarce, and bad data make for bad policy decisions.
Whatever the long-term challenges, people with intellectual disabilities must be treated equitably for coronavirus testing. And when they get sick, they deserve compassionate support. Physical separation on top of sickness and anxiety can be emotionally devastating for anyone. Hospital visitation rules should be carefully relaxed so relatives or caregivers observing strict safety precautions can be with people who have intellectual disabilities during coronavirus care and testing.
Over many decades, progress has been made: surely, slowly, beautifully. The May issue of Pediatrics, published by the American Academy of Pediatrics, notes: “Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities.” That matter-of-fact line reveals a shift, long in the making, that life-or-death medical decisions must not be tainted by bias about the worth of a human life.
That may sound plainly obvious. But it hasn’t always been. Parents asked, and often begged, to have children with intellectual disabilities approved for transplants. Sometimes their efforts succeeded but more often failed. Today, they’re working anew to receive equal treatment for covid-19. They will continue to battle the indifference and active hostility of an establishment that has long considered these lives less valuable and not worth saving.
For people with intellectual disabilities, Special Olympics was never just a track meet. Our beginning, at the height of the civil rights movement, was a communal leap from darkness into sunlight. The impulse amid a viral threat is to shut down and withdraw, but making the opposite leap now is a global health imperative.
The pandemic has clarified what needs to happen. We all have so many questions about what comes next, what dangers and challenges await. If the goal is justice, then the best answer is the one our organization has been giving since 1968: Everyone belongs. Everyone has a gift. Everyone deserves dignity. No exceptions.