During the 1918 Spanish Flu epidemic, Dr. Max Carl Starkloff, great grandfather of my late husband Max J. Starkloff, was health commissioner for the city of St. Louis. Max used to tell me about how his great grandpa went into then-Mayor Henry Kiel’s office to tell him that he was going to shut down the city of St. Louis and send everyone home in an effort to contain the disease. Mayor Kiel, according to the family telling of this tale, said, “Over my dead body!” As history shows, the city shut down all of St. Louis and thousands of lives were saved.
Now comes the coronavirus pandemic, 102 years later. Around the world, people are dying of this virus. The spread is gaining momentum, and Americans have shut down schools, large events and now even small gatherings. As days go by, more drastic shutdowns will occur. We have a new phrase: “social distancing.” There is talk that there are not enough hospital beds, protective masks and gowns for health care professionals, and tests to adequately diagnose the public.
There also are well-founded fears that there may not be enough oxygen ventilators to help save the lives of people who contract the novel coronavirus and succumb to pneumonia. Doctors might have to make a decision about who gets a ventilator and who doesn’t. Say there are two people who need a ventilator: one with a disability and one without a disability. Will a doctor make the decision that the disabled person doesn’t get the special equipment?
I raise this real question from experience. During the last 10 years of my late husband’s life, he had a few personal incidents with pneumonia. Each time he was in the emergency room, doctors would ask me if they should intubate him. My answer was always, “Yes!” His life was worth saving.
This may be standard practice in the emergency room, but I wonder. Do they ask that about anyone who needs intubation or just older and/or disabled people? Would they ask that about patients in their 30s, 40s or 50s? The concern is that doctors could make a decision that the life of someone with a significant disability — like quadriplegia, spinal muscular atrophy, multiple sclerosis, cerebral palsy, Down syndrome, autism, you name it — is not a life worth saving.
Our lives are worth saving.
Since the beginning of the disability-rights movement in the mid-60s, people with disabilities have fought paternalism, discrimination and able-ism. We laid the groundwork for people with disabilities to live healthy, productive lives without people making decisions about us — without us. With the advancement of technology and the accessibility of our world that we fought hard to secure, we are capable of full participation in our society. Seeing us as somehow less valued, less capable, less worth saving is dangerous.
In the midst of this global pandemic, the Starkloff Disability Institute has big decisions to make, just as every other employer in the world does. We have many staff who are at higher risk of serious complications from the coronavirus. Our decision to close will hopefully thwart the risk of these staff members having to fight the idea that their lives are not worth saving. Thanks to the technology that is available, we will continue the work we do every day to empower people just like us to live a quality, productive life.