The COVID-19 pandemic challenges our notions of how “normal” life works. Work-at-home, virtual education and social distancing are giving our entire population a taste of how everyday life functions for many of the USA’s nearly 60 million people with disabilities. What typical people are unable to share in, however, is the way people with disabilities are treated as expendable, somehow not-as-fully-humans, by our political, legal and health systems, and the responses to COVID-19 are bringing those distinctions more clearly to light.
Calls are spreading across the country for withholding health care from people with chronic and severe disabilities, to expose everyone in order to “cull the herd” or to preserve scarce resources for “normal” or younger people. The states of Alabama and Tennessee have already declared that certain groups, including people like me with ALS, are not to be admitted to hospitals so that people who are more qualified for living can receive care. Official crisis guidelines in many states even call for removing ventilators from chronically ill people who use them in order to give the machines to others deemed more worthy of life.
I will be blunt: this is state-sponsored murder.
These are systematic, premeditated plans to actively take lives.
This is discrimination against people with disabilities.
These are decisions to kill people who are arbitrarily deemed expendable.
Our for-profit health care system, and those who support it, is an accomplice to these crimes. For-profit hospitals treat unused beds and equipment as unsold inventory and strive to maximize occupancy and utilization in normal times, resulting in far too few beds and other equipment available in health crises. My local hospital has 55-inch flat screen televisions for every patient, but at last count just one cough-assist machine for clearing out fluid in people’s lungs. Do we entertain people so they care less about the cost? Or do we entertain people in order to drive up the profits? We are already experiencing a massive disparity in health outcomes for poor (read: people of color) areas due to deportation fears and the excuse of treatment not being economically viable, and now people who are otherwise not typical are being told to give the ultimate sacrifice in order for “normal” people to live longer.
Germany, which has a rational health care system and a culture that believes in protecting the common good, has 4 times more hospital beds per capita. The U. S. has 1.5 times more COVID-19 cases than Germany, but we have nearly 6 times more deaths. Finland has 1/10th the cases, 1/25 the deaths. Sweden and Canada: same as Finland. Norway: even better.
To be sure, governments in those countries were better prepared for a pandemic (and didn’t deny they had one) and they have populaces who actually listen to their governments. But they also have health care systems with more reserve capacity available in times of crisis. Our system, built and enabled by our governments, has failed in the first and most vital responsibility – protecting, without discrimination, the lives of its citizens.
I anguish with my fellow people with ALS, and all those with disabilities, who now are faced with the prospect of not seeking medical care for fear of having their ventilator taken away and being left to die, alone, in a hospital. I grieve for medical professionals who are forced into choosing who lives and dies. Mostly, though, I am genuinely angry that society is so quick to judge my life, and that of others like me, as less worthy of living.
As expendable.