Predictions that up to 70 percent of the population will contract COVID-19 this year create a horrifying reality for me and the millions of other people with disabilities in this country. We live with the constant reminder that, on any given day, a silent killer could come knocking on our doors. And for those of us who are unable to self-isolate effectively during the coronavirus pandemic due to our dependence on caregivers, it seems as though it’s only a matter of time before our killer gains entry.
Yet no one in leadership is talking about us — 790,000 people in Massachusetts alone and 61 million adults in the United States. We are simply looking for the hope necessary for our survival. Each day of this pandemic has become more terrifying than the last.
At 3, I was diagnosed with a progressive neuromuscular disorder called spinal muscular atrophy, and I lost the ability to walk at 11. With the use of a power wheelchair, I was able to live independently, become an attorney, and accomplish my dreams. That is, until everything collapsed with the onset of Ehlers-Danlos syndrome. I went from trying cases to suffering through eight years of isolation, chronic illness, and unimaginable pain. To my further devastation, the SMA progressed, and I was forced to rely on caretakers for daily living, such as getting dressed and in and out of bed.
Thanks to hope, self-advocacy, and a supportive family, I was able to regain my health and reclaim my life. Last year, I was admitted to the Harvard Kennedy School on a full merit scholarship. Ever since, I have spent each day making a sharp U-turn toward a path to the American Dream. Then, in an instant, the COVID-19 pandemic catapulted me into yet another dead-end of isolation.
During the White House press briefing on March 17, Vice President Mike Pence announced, “You don’t need the results of testing to know what you should do.” While this might be true for most Americans, this is a gross misrepresentation for people with disabilities.
A few weeks before President Trump declared a national emergency, my part-time caretaker went abroad. She returned with symptoms of an upper respiratory infection and a dry cough. I asked her to stay home until she improved. But three weeks later, her condition still lingers. While the answer is to test her for COVID-19, she has been repeatedly denied.
Without her assistance, we must rely on volunteers to leave food and supplies in my apartment lobby. My mother then carefully retrieves them with gloves and disinfects each item with Clorox. I am forbidden to go outdoors due to the risk of inadvertently encountering the virus. My doctors are scrambling to provide my standard care at home even though a visiting nurse would also increase my risk exposure.
The isolation and uncertainty of this situation have been challenging, to say the least. The chances of infection have caused my mental health to erode. While everyone else hears the deafening silence of ghost towns and abandoned streets, I hear the loud rumbling of an impending tidal wave of contagion ready to carry me away to an untimely death.
Moreover, the existence of draconian laws that call for medical rationing during a public health emergency makes it clear that I will certainly be left to die if our hospitals reach capacity. For example, in Tennessee, people with SMA can be legally denied critical care if they require assistance with activities of daily living. As Ari Ne’eman points out in The New York Times, policies like this exist throughout the country, and a glance into our future will likely mimic Italy’s current predicament, where they are sacrificing the medically fragile for the healthy.
Unfortunately, my situation is not unique. Twenty percent of American adults are disabled and at risk of contracting severe COVID-19 due to a disability. Hundreds of thousands of Americans have significant disabilities, rely on caretakers, and have a higher risk exposure than virtually any other community. Contrary to Pence’s statement, we don’t know what to do without access to testing, because we and our caretakers need regular testing to reduce that risk.
My experience with years of illness and isolation taught me one critical lesson about survival: Without hope, death is inevitable. Thus, our political leaders need to give us a glimmer of light in these dark times. Rather than minimizing the scarcity of tests, the government needs to provide regular in-home testing to Americans with disabilities, our caretakers, and home-health providers. And our government must guarantee life-saving care to every patient, regardless of age, disability, or preexisting condition.
It must be clear to us and the nation that disabled lives matter. Anything less is an undeniable statement that our lives are expendable and our mental health is irrelevant. The real question is: Do our leaders, in Washington and across the country, have the moral integrity to recognize that these issues exist in the first place?
Ariella Z. Barker is a fellow at the Harvard Kennedy School of Government.