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Sunday, September 27, 2020

Disability Rights Are Now Life Or Death

I am a proud Jew. I am also a 38-year-old quadriplegic with asthma. Millions of Americans – myself included – are at high risk from the virus and from medical rationing. Sadly, the de facto devaluation of disabled lives in healthcare is nothing new, but there is a current push to make it policy. It is always hard to determine the best way to allocate scarce resources, but Jewish tradition teaches that every life is of incalculable worth. Doctors will have to make enough tough choices, about who is likely to survive, and already will have to make the terrible judgment about who can survive without say, a ventilator, and who will die even if they have one.

Let us not compound this challenge by asking our doctors to place subjective value on individual lives, both because it is unfair to them and because any such subjectivity would necessarily disadvantage those whose life experience is very different from that of the doctor, including people with disabilities. After accounting for the likelihood of survival, first-come first-served is the only rational way to decide between two lives of incalculable value.

So, the question becomes, how can we as Jews ensure that this injustice and others do not become reality in this crisis. There is a major place for individual efforts and philanthropy on this issue, and yet all of the resources that we can muster pale before the nearly $2 trillion that our elected officials are soon to vote on, in order to allocate resources to deal with this crisis.

Our greatest effort, therefore, is to help those in power understand what is right. There are three important steps that our government leaders can take right now to ensure people with chronic health conditions and disabilities – who make up nearly 20 percent of the population in the United States, including millions who are immunocompromised – are not left behind. Please consider raising your voices in the pursuit of justice to share them:

  1. Ensure Equal Healthcare Priority for People with Disabilities – As the crisis intensified in Italy, the government response to the strain on the healthcare system was to systematically ration healthcare away from people with disabilities. This approach is already illegal under American law, but it still happens nonetheless. We should send a clear message that we do not support this devaluation of disability lives
  2. Ensure That Short-Term Help Doesn’t Do Long Term Harm – Salutatory efforts already are underway to provide financial assistance to the people hardest hit by the impact of this crisis, as well as other payments to stimulate the economy. To ensure this extra income not interrupt access to lifesaving services for people with disabilities, it should be excluded from the $2000 asset cap Which applies to disability benefits.
  3. Ensure People with Disabilities Have the Supplies They Need in This Time of Quarantine – The realities of quarantine efforts to keep the community safe have fundamentally changed access to food and necessities. We need to make programmatic modifications to make sure that people with disabilities have the food and medicine that they need in this time of crisis.

For more detail on these steps, and others that you can take, please visit our website.

Our organization is one of many on the front lines and we need allies. And let us be a strong ally to you. For example, as you make your meetings virtual, RespectAbility is available to help you make those convenings accessible to people with disabilities who are deaf and/or blind. Please email me if you need support in this way, or if you have support to offer.


Matan Koch is Director of RespectAbility’s California operation and Jewish leadership work. He can be reached at [email protected]

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