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Disability Rights Activist Shares Concerns About Coronavirus Rhetoric, Crisis Care Plans

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During this global pandemic, many medical decisions are having to be made about who can receive what kind of care. Disability rights activists, like Storee Powell, who works at the Center for Person’s with Disabilities at Utah State University, said many of the current policies are discriminatory. UPR’s Matilyn Mortensen spoke with Powell about why she finds these attitudes so concerning.

Matilyn Mortensen: Thanks so much for your time today, Storee. Will you start out by introducing yourself to our listeners? 


Storee Powell: Hi Mattie, my name is Storee Powell. I'm 32 years old and I live here in Cache Valley. I have been doing disability advocacy work for 10 years. It's not something I just do professionally, but it has also profoundly affected me personally. I have my own disabilities. I also have many dear friends and family members who also have a variety of chronic illnesses and disabilities who are also high-risk for the coronavirus. 


MM: So Storee, based on both your personal and your professional experience, will you share with me some of the concerns you have in relation to the coronavirus or some of the concerns you've been hearing from other people with disabilities? 


SP: I think foremost is that our voices are being left out of this conversation. This is something that is going to affect the disability community extremely hard, harder than other communities. Because of that, our voices need to be more included. When we're deciding who can have special grocery shoppers for high risk people, that needs to include disabled and chronically ill people – we are high risk. I think that we need to think about how isolation and mental health is going to affect our community even more. This is just an even more drastic form of what disabled people and chronically ill people already live. I also really would urge people to think about the language they're using, including the news media. I continually hear the words used to refer to chronically ill and disabled people as we're “only” or “just” as if we're some sort of acceptable collateral damage. That says a lot about the values of our society. Do we feel that disabled lives are more expendable? I sure hope not. 


MM: You mentioned resources Storee, and I know that's something we're seeing in other countries where the virus is more widespread; resources are becoming scarce and decisions are having to be made about who gets those. I know that's something that officials in the United States are worried about. What are the concerns you're hearing from people in the disability community about how those resources are going to be allocated? 


SP: One of the things that has come up are prescription shortages. Certain things are either being used as compassionate care to treat coronavirus or as experimental treatment since we don't have any drugs approved for it right now. The problem with that is people that have relied on that to treat their chronic illnesses and disabilities, and in many of them in a lifesaving way. I have had reports from friends, as well as actually a drug myself, reports that some of these are becoming hard to access because of overuse, and I am really worried going forward if able-bodied people will be chosen to receive these drugs over disabled people that have been using them for decades. The other thing is things like ventilators that there may be a shortage of, and they will have to choose who lives and dies. Many people like to think of it that it's best to choose the policy that would save the most people. But I'm going to argue that that would actually be discrimination. If you are choosing to not save someone because they're chronically ill or disabled, that goes against disabled civil rights. 


MM: And so when we're talking about those policies that you are saying discriminate against people with disabilities, we're talking about policies that would allow medical providers and hospitals to allocate resources for recovery based on whose quality of life they thought was the best and based on who would need the least amount of resources to recover. The idea being someone who is chronically ill or disabled may be able to recover just fine, but the resources that are used to help them may be able to help multiple other people. The argument for this policy is that it would save the most amount of lives but what you're arguing for and what other disability activists are saying is that this policy is not equitable and would lead to discrimination. Instead, it's being proposed by you and others that a first-come, first-served basis is the most equitable and fair way to approach this. Is that correct? 


SP: Yes. I believe many of the policies and values that are being shared with the medical community right now have been quantity over disabled life, and I would just like to point out that that is discrimination. And it would result in, I believe, a genocide of disabled people specifically because they're disabled and require more resources. 


MM: And so the counter-argument to this Storee is that the highest priority should be saving the most lives possible. What's your response to that? 


SP: Nobody can put a value on anybody's life. Why do healthy people get to say that, people like me, our lives are worth less? And I think too, maybe people are misunderstanding. I am not saying that people who would die anyway should receive more resources than someone else who could be saved. People like me may require more resources, but I still could be saved. 


MM: And so Storee, if these types of policies are concerning to people, what are their options for courses of action? How can they respond to the situation? 


SP: First, I want to say directly to people who are disabled and chronically ill, and this includes those with intellectual and developmental disabilities, you are worthy of life. It is okay for you to be upset about this. It is okay for you to fight for it. You should advocate for yourself. I would then ask that people who love someone with a disability in their life, that they also become allies and advocates for them. Talk to health care providers, talk to lawmakers, talk to your general community. I think that this is a conversation that has been waiting a long time to happen, and this is the perfect opportunity to do it. 


MM: Thank you so much for your time today, Storee. 


SP: Oh, thank you, Mattie. I appreciate you giving me a voice on this important issue. 


If you are experiencing discrimination because of a disability or if you are in need of support or resources, contact the Disability Law Center.