Author’s note: The COVID-19 crisis has already lasted several months. The reality is that we don’t know how this will go. But as a community, my opinion is that we need to be ready. We need to be knowledgeable. This column will focus on some work we have done to help protect people with disabilities. It may not be easy to think about the possibilities discussed here. I want to make that clear before you read further. But we must prepare and understand.
How do we put a value on someone’s life? Is the person with more money more valuable? Or the younger person? Or the person who works more hours?
It’s ridiculous to think that we can do that type of comparison at any level. Every life has its own intrinsic beauty for the person who possesses it.
A great philosopher, Aristotle, said, “The ultimate value of life depends upon awareness and the power of contemplation rather than upon mere survival.” And the famous Japanese engineer and industrialist Soichiro Honda said, “The value of life can be measured by how many times your soul has been deeply stirred.”
Both give us a perspective about the beauty of life based on their own thoughts and experiences. These are powerful statements. They give us the strength to create our own masterpiece. These thinkers did not attempt to put a measure on life by rating one person versus another.
You can imagine the shock that I and other disability leaders had when during this COVID-19 crisis, we heard about this type of valuation of life. States and hospitals faced the possibility of having to make life or death choices. We all heard stories that this had occurred in other places. Impossible decisions had to be made in cases where one ventilator was available for several patients that needed it to help them breathe.
And then we saw an NBC News article. For many, it was a “catch-your-breath” moment. Is it possible that in the United States, there is talk of ventilator rationing? This article talks about disability rights groups filing complaints with the U.S. Department of Health and Human Services’ Office for Civil Rights (OCR).
After this story came out, I received a call from Kathryn Bryant, the founder of The Speak Foundation. I previously have written about Kathryn and her organization in my columns. And I attended and presented at her 2019 conference.
We discussed our concerns for patients with muscular dystrophy and decided to approach this in two ways. First, we set a call for various groups working with individuals with MD. We wanted to get input from people who understood MD and all the ramifications and symptoms. We also reached out to the OCR.
The call with the MD groups helped us define our concerns. We clarified our desire to reach out to the OCR and make sure that they were stepping up on this. Our position was clear, individuals with disabilities should not be discriminated against. We also came up with an idea to do a checklist. This would help patients needing care during a crisis.
On the call with OCR staff, Kathryn and I shared a second article with them. We discussed what the muscular dystrophy community expected regarding medical treatment in a crisis. We made it clear that we would be educating and instructing our groups. We want individuals with muscular dystrophy to know their rights. They also need to know how to prepare.
OCR staff assured us that they were taking the situation seriously. They issued a bulletin that made clear the continuing applicability of civil rights laws during the COVID-19 public health emergency. And in subsequent days, they resolved cases against Alabama and Pennsylvania. This resolution forced the states to make changes in how they would handle pandemic triaging to protect against disability discrimination.
We believe that we have enough clarity. But we know things can get out of control at the ground level as first responders work crazy hours against difficult odds. We decided to put together resources for patients at The Speak Foundation website, including a letter to the muscular dystrophy community and another to healthcare providers. We also developed a checklist for you. Being prepared and knowing your rights is so important.
As always, I’d love to hear your thoughts and concerns.
Update: As we locked down this column, the L.A. Times reported additional information that I’ll share in the comments below. Some questions may still be unanswered, and we need more clarity. Please stay with us and follow the conversation as it goes. Thank you!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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