Healthcare rationing or Murder by Triage. One certainly sounds more polite and policy-like than the other… but, really, which is one is the Disability Community confronting as our society struggles with COVID-19? What lessons should we learn and what actions should we take?

See episode notes.

I’m your host, Steven Davis and welcome to the third episode of Disability Democracy Radio. This weekly podcast is about practical actions we can take – that YOU can take – to make a difference in your community. The goal of Disability Democracy Radio is to accelerate the disability community revolution. Find out more at disabilitydemocracy.org.

Sometime back in the late 1970s…..whew, 40 years ago I caught the end of the movie “Johnny get your Gun”, probably on UHF TV (for my younger listeners, back then, movies were only on Once – at a specific time, not rerun, and we were lucky to have probably … 6 channels or so in the LA area where I lived… ).

Anyhow, I was pretty young, maybe 12 or so, and it made a profound and lasting impression on me and deeply affects how I think about disability.

My singular memory is an image of a man, silhouetted in black and white, totally physically disabled, lying in a hospital bed wrapped in bandages. He had lost both arms, both legs, and his face to an artillery blast in the First World War. He couldn’t speak aloud, he just barely sign Morse code with his fingers. Signs that no one noticed.

Everything we heard from him was his internal voice.

As I tuned in, the doctors and hospital staff were deciding to give up on him. Keeping him alive, but essentially abandoning him as a person. Consigning him to a human warehouse for the rest of his life

The film ended with him silently signing “S O S, help me”. Left alone. Isolated. Abandoned.

It was, perhaps, the most terrifying thing I had ever seen, a human, an intact soul, abandoned, yet left alive… and that image has stuck with me ever since.

Today, the reality that our elderly and disabled people are facing is much worse.

Insurance companies, hospitals, healthcare workers, and doctors, are withholding vital medical equipment and services.

Respirators and medicines that these elderly and disabled people need to live. In some cases, our “medical system” is even withholding food and water.

Triage” they say.

Even worse, anecdotes and cases are coming to light of doctors cajoling individuals and families to “End things” (the disability community and “assisted suicide” is a topic we’ll come back to in a future episode).

In Texas, Michael Hickson, a 46 year old black man who was paralyzed 3 years ago, was admitted to St. David’s South Austin Medical Center on June 2nd. Mr. Hickson had contracted COVID 19 from a staff member in his nursing home.

His wife, Melissa Hickson, apparently recorded his doctor saying

“As of right now, his quality of life, he doesn’t have much of one.”

 

She asked “What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?”

“Correct,” the doctor replied.

The hospital allegedly pushed Mr. Hickson into a conservatorship when his wife would not agree to send him to hospice.

Michael Hickson died on 11 June. Just 9 days after he was first admitted to the hospital. His wife didn’t find out until the next day after his body had already been transported to a funeral home.

He is not alone.

According to local activists, cases such as Hickson’s aren’t uncommon in Texas’ health care system and elsewhere, doctors are increasingly removing life-sustaining care when non-family members determine that a patient’s life isn’t worth living.

Just a reminder that full episode transcripts and additional resources are available at disabilitydemocracy.org. We welcome your comments, feedback, and suggestions. Let us know how we can make Disability Democracy Radio more accessible and actionable for you.

In March, as the US was starting to shelter-in-place and confront the Coronavirus, disability rights advocates were becoming alarmed.

Stories of healthcare rationing were coming out.

Individuals who depend on ventilators were seeing spares disappear and consumables becoming scarce.

This is and was, in fact, totally illegal.

Even worse, politicians and policies were starting to come out against the disabled and elderly.

Texas Lieutenant Governor Dan Patrick suggested that old people should be “willing to die to save the economy.”

Here in California, the first public draft policy for healthcare response to COVID 19 included a “triage” proposal that would discriminate against the elderly and the disabled. Rights advocates fought back and the policy was rapidly withdrawn and revised.

But “triage” was the first response of our public leadership.

These positions and policies are a violation of the 30 year old Americans with Disabilities Act. You can’t discriminate in providing healthcare.

Concerns continued to rise. Disability rights groups spoke up enough that the Civil Rights Office of the US Department of Health and Human Services released a bulletin reiterating protections and rights to healthcare for disabled individuals at the end of March. Several states have issued local guidance supporting the same, often in response to prompt actions by disability rights organizations and advocates.

And the challenges have continued.

In May, the Department of Health and Human Services had to put out another policy bulletin stating that caregivers can visit people with disabilities while in the hospital (another topic for an upcoming episode) in response to a complaint, this time from Connecticut.

While these cases have all been tactical successes, we should all be worried.

Very worried.

We have well-established law on our side. Law that the disability community fought hard for. It is ironic (or …..something) that the same year we are celebrating the 30th anniversary of the Americans with Disabilities Act – 26 July 2020, its basic principals of disabilities rights are under direct assault.

What have we done wrong – or what didn’t we do right?

Were there not enough teeth in the ADA?

What are the consequences if a doctor or healthcare provider does discriminate?

Can a doctor lose her or his license for violating the ADA? Has anyone?

What kind of damages do victims get? How successful have they been? How hard have they had to fight?

In the past couple of months,the disability community has done a great job of working to get the word out on disabled patients rights out to both the disabled community and the healthcare system… but did we do enough over the last 30 years to educate both the disabled community of their rights and the healthcare establishment and political and policy leadership of their responsibilities?

It is clear that we need to be much more pro-active educating our community, our public leadership, and our healthcare systems that the ADA is about more than ramps, it is about human rights.

We also need to look at how and where we engage with policy makers.

And how we can work together better as a team.

Lives and livelihoods are on the line.

It is time to play in the big leagues. For all of us to get involved. For a full court press. Every level of government. Ever lever of influence. Every group. Every individual.

Not just in Congress and the courts, but in legislators and local school boards and commissions. Change the systems from the inside and pressure them from the outside.

Learn from the successes and failures of others.

We need to act at the federal, state, and sometimes even local levels for many issues. If the is an action at the national level, we likely should have a parallel effort in each state. The conservative group ALEC puts out model legislation for every state on the issues they care about. We should do the same. Illinois passed a strong measure to protect disabled patients rights under COVID… disability activists every state should be able to easily bootstrap successful laws and strategies.

We need to make it easier for all our various organizations to collaborate – sign on to open letters, participate in petitions and outreach to elected leaders. ActBlue brings progressive groups together. WinRed is there for conservatives… why not us? If not directly together, we can collabrate, in concert. More organizations. More individuals. More voters. More power.

From the 1 in 5 to the Formidable Fifth.

We need to better coordinate legal actions with policy, legislative, and political activities. There have been disability rights cases that have dragged for decades. It took 28 years to settle a major special education case in Ohio affecting students in 11 school districts. 28 years. How many kids educations were lost while schools dragged things out in court? Why shouldn’t they? What did they have to lose?

The longer they wait, the less they had to do.

Meanwhile, the right to education, the key to the future of thousands, maybe tens of thousands of kids was lost.

We need political and legislative strategies to complement legal actions. Passing better laws and electing allied representatives as well as disabled leaders. Learn from groups like Emerge who are developing women elected leaders at all levels. And we need to more than just get our community and friendly leaders elected, we need them to be effective. Realistically, political power is going to have deeper, faster, and broader impact than depending soley on court cases. In my family’s experience in special education, while it was necessary and helpful for us to hire an attorney, our bigger success came from having teachers and school leaders who actually believed in a real education for our autistic son.

You can’t force people to care.

Those doctors didn’t care. They didn’t believe that a disabled, black man’s life could have value.

LBGTQ rights have moved as quickly and as decisively as they have by engagement at every level of the system.

They struggled and overcame their stigma, we need to do the same.

If we don’t, we’ll keep having to fight and refight battles that we’ve thought we won. Parents of kids with disabilities are doing this every day for the educational rights of their children. Disabled adults, their loved ones, and the disability community as a whole is doing the same now to stop murder by triage.

This episode of Disability Democracy Radio was sponsored by Not Without Us. Not Without Us is a 501c4 mutual benefit corporation. Our goal is equality for all disabled adults and kids with disabilities. You can learn more about our work at notwithoutus.org. Our strategy is built on democratic action – whether it is providing support for disability organizations and allies through our directory at disabilitydemocracy.org, training aspiring local candidates for office, endorsing candidates, or directly working on issues.

We’d like to thank Julie Neale and Alexia Worsham for their contributions to Not Without Us. You can support Not Without Us with an annual, monthly or one-time donation at notwithoutus.org/join. If you have any questions or comments on this episode, visit disabilitydeomcracy.org – you can email us, leave a comment, or even a voice message. I’m Steven Davis and on behalf of Not Without Us, we think that democracy comes not from a vote every two years, but from the actions we can take every day.

https://disabilitydemocracy.org/issue/covid-crisis-healthcare-rationing-on-basis-of-disability-is-illegal/

http://www.bpnews.net/55039/texas-hospital-ends-mans-covid19-treatment-due-to-his-disability

https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html

https://www.publicnewsservice.org/2020-07-10/disabilities/or-law-allows-patient-advocates-for-people-with-disabilities-in-hospitals/a70814-1

 

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