Earlier this month, the American Association of People with Disabilities held a conference call so members of the public could hear experts discuss a topic of urgent concern: medical rationing during COVID-19.
Even though I have a Ph.D. in social work and am an instructor in Disability Studies at the University of Texas at Austin, my eyes welled up with tears as I listened to the call. So real, and so terrifying is the risk that medical care providers might deny life-saving treatment to Americans who can’t always speak for themselves, a senior staff attorney at a national disability rights group suggested the unthinkable: using a marker to write “I want life-saving treatment” directly onto one’s body.
Despite years of work by human rights activists, despite all the legal gains achieved by countless grassroots organizations working over the last seven decades, an alarming number of people are returning to a dark, uncivilized way of thinking: viewing folks who are disabled as somehow less valuable human beings.
At the Texas Center for Disability Studies where I teach, my colleagues and I became concerned last month by news stories cropping up around the country describing hospital policies mandating that, when supplies and staff are strained in a medical crisis, disabled people should be sent to the end of the line.
The University of Washington Medical Center in Seattle issued guidance on March 20th that if there is a moment of caregiver scarcity, doctors should choose younger, healthier patients to support.
On March 24, the Alabama Disabilities Advocacy Program brought national attention to the state’s Emergency Operation Plan—which decreed “all persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support”—through a complaint filed with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights. Alabama’s plan was designed as a last resort guidance if all other medical guidance options were exhausted—which is what many hospitals are currently experiencing and why the plan was being scrutinized.
To single out folks with disabilities as inherently less worthy of medical assistance or ventilator support ignores their basic humanity. If I break my leg and need a wheelchair to get around, or develop asthma and rely on a breathing machine, does that suddenly negate my worth as a human being?
If someone you love, like your child, loses a limb, are they somehow less of a person to you than they were before? Do they matter less? Of course not.
A disability means living life differently; it doesn’t invalidate the worthiness of a person’s life.
In response to the actions in Washington and Alabama, various advocacy organizations—including The Arc of the United States, the country’s largest and oldest nonprofit advocacy group working for the rights of people with intellectual and developmental disabilities—filed a complaint against those states with the HHS’s Office of Civil Rights.
In addition, a group of bipartisan Senators and members of Congress, including Sen. Kirsten Gillibrand (D-NY) and Sen. James Lankford (R-OK), sent a letter to HHS and Attorney General William Barr asking them to remind states of their “obligation to adhere to existing anti-discrimination laws when responding to COVID-19” as it relates to those with disabilities.
On March 28, HHS’s Office of Civil Rights issued a bulletin reminding hospitals of their obligations to “prohibit discrimination,” and pay close attention to ensuring they “do not unlawfully discriminate against people with disabilities when making decisions about their treatment during the COVID-19 health care emergency.”
Perhaps returning to a backwards way of thinking should be no surprise given that Texas Lt. Governor Dan Patrick has shown a callous disregard for the sanctity of all lives—telling a cable news anchor that folks 70 and over “can take care of themselves during this pandemic,” and that, as a senior citizen, he would exchange his own survival so his kids and grandkids can enjoy “the America that all of America loves.”
For folks like me, who have a loved one with a disability that limits her capability to independently advocate for herself in a hospital, and because we’re in a pandemic where medical providers are excluding family members and caregivers in hopes of stemming additional infections, this kind of talk and these medical action plans have me nightly waking up in a panic.
The speaker on the call was Silvia Yee, a seasoned attorney with the Disability Rights Education and Defense Fund, who has seen firsthand how even medical caregivers might mistake an inability to form words as the absence of a treatment-worthy human being. That my sister would need to follow her initial advice, for adults with disabilities to carry a signed “I Know My Rights” document on their person at all times, is heartbreaking.
But scrawl “I want life-saving treatment” directly on her flesh? The image haunts me constantly.
I find it shameful and utterly horrific that, two decades into the 21st century, it’s even possible that health providers and elected leaders could be unaware that people with disabilities are entitled to all the same rights as their non-disabled peers. Regardless of what type of crisis we face—be it a hurricane, flooding or disease—every person should be considered worthy of life-saving medical support.
There are moments throughout history where we have stood together to fight for equality. In 1977, when disabled activists took over San Francisco’s Health, Education and Welfare building for 25 days to force President Carter to implement Section 504 of the Rehabilitation Act, a federal law passed in 1973 stating that no agency receiving federal funds could discriminate against people with disabilities (and a precursor to the federal Americans with Disabilities Act of 1990). Black Panthers and Gay Liberation Activists came together to ensure success because they knew the right to exist is a basic human and civil right that matters for everyone.
Just as in 1977, we need to stand together and see one another’s humanity. We all need to demand an end to any policy that diminishes the worthiness of any person.
If this country is to be great, we must be able to pin hopes of loved one’s survival on more than a Sharpie tattoo begging for life.
Dr. Winges-Yanez created this 5 minute video to assist families in preparing an essential document that can accompany loved ones in the hospital when a caregiver or loved one is prohibited:
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