Welcome back to the What’s The Matter With Me? Podcast.

Day 42 of Covid-19 Coronavirus quarantine finds me thinking about the value of disabled life.

What is the Principle of Non discrimination?

The principle of non-discrimination seeks “to guarantee that human rights are exercised without discrimination of any kind based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status such as disability, age, marital and family status, sexual orientation and gender identity, health status, place of residence, economic and social situation”.

Committee on Economic, Social and Cultural Rights, General Comment No. 20, Non-discrimination in economic, social and cultural rights; 2009.

Do disabled people deserve assistance even though they may require more resources than the ‘average patient?’

(When too many patients are in urgent need at the same time), some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.

Ari Ne’eman, ‘I Will Not Apologize For My Needs,’ New York Times, March 23, 2020.

Begin Transcript

JOHN HOPPIN: Yes! You are tuned into the What’s The Matter With Me? Podcast. My name is John, I’m 40 years old, I have MS (multiple sclerosis), I’m a father and husband, small business owner, radio DJ, podcaster. Right now I’m 40 days into this coronavirus quarantine, on week five at school. Anyhow, it just feels like we’re inside forever. I think you all know what I’m talking about, so I’ve wanted to get in touch. I have had some stuff on my mind.

First, I want to bring in this idea of the principle of non-discrimination. It’s defined by the World Health Organization as, the principle of non-discrimination seeks to guaranteed that human rights are exercised without discrimination of any kind based on race, color, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, such as disability, age, marital and family status, sexual orientation, gender identity, the health status, place of residence, economic and social situation. That was defined by the Committee on Economic, Social, Cultural rights in 2009.

This whole outbreak is going on, and it’s made me think about the value of disabled life. First, that a disabled life is worth living. I think it’s obvious my life rules and it’s worth living. I mean it’s my life, you can’t take it from me. So why think about this stuff? Well, I’ve read this article called, I Will Not Apologize For My Needs, by Ari Ne’eman, in the New York Times of March 23rd 2020. He writes:

Times of crisis ask us who we are as a country. As hospitals prepare for shortages in ventilators and other scarce medical resources, many people with disabilities are worried about the answer to that question.
In Italy, doctors are already rationing access to care on the basis of age and disability. The Washington Post reports that many states are considering how to implement similar rationing measures here. Though almost everyone would agree doctors may deny care that is unlikely to benefit a patient, there may soon be too many patients in urgent need of lifesaving treatment and too few resources to treat them all. When that happens, some are proposing to send the disabled to the back of the line.
States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble. …
Italian clinical guidelines have called for “the presence of comorbidity and functional status” to be evaluated as considerations in the allocation of resources, as “a relatively brief progression in healthy patients could become longer and thus more resource-consuming on the health care system in the case of elderly patients, fragile patients or patients with severe comorbidity.”
This idea is both straightforward and concerning: Patients with disabilities may require more resources than the nondisabled. In a crisis, the nondisabled can be saved more efficiently. As a result, when doctors must choose between a disabled and a nondisabled patient with similarly urgent levels of need, the nondisabled patients should get priority, since they will recover more quickly, freeing up scarce resources.
Adopting such an approach would be a mistake. Even in a crisis, authorities should not abandon nondiscrimination. By permitting clinicians to discriminate against those who require more resources, perhaps more lives would be saved. But the ranks of the survivors would look very different, biased toward those who lacked disabilities before the pandemic. Equity would have been sacrificed in the name of efficiency. …
At its core, these debates are about value — the value we place on disabled life and the value we place on disability nondiscrimination. When Congress passed the Americans With Disabilities Act 30 years ago, did it do so as a form of charity limited to times of plenty? Or was our country serious about disability as a civil rights issue? Charity can end when resources are scarce — civil rights must continue, even if doing so imposes a cost in time, money and even lives. People with disabilities have an equal right to society’s scarce resources, even in a time of crisis.

Ari Ne’eman, “I Will Not Apologize For My Needs,” New York Times, March 23rd 2020

Ari Ne’eman is a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University, and the Doctoral Student in Health Policy at Harvard University. He’s at work on a book on the history of American disability advocacy.

So this person is like a hero, Ari Ne’eman. I got to connect with that person- he is onto something right? What am I? I am just like blah, blah blah. But disabled life is worth living, reading this as an MS patient freaked me out. I’m not going to lie, that was back in March. I had been sequestered at that point in the house for 10 days and I’m still here. It’s a month after. So I’ve been thinking about how disabled life is worth living, my life is worth living.

I think that a society that’s been edited because of discrimination is not a kind of society that I’m looking at (as the type of society I want to live in). I want our society, I want everyone in it. Just because people are this or that, I don’t want them edited out of our society. And so, I’m concerned, you know? It’s a personal issue that is also a civil rights issue.

Anyway, shout outs to my parents. My mom said I sounded bummed out on the last episode, so I hope this wasn’t too much of a bummer, and I’m not bummed out, I’m here at the house. We’ve got a lot of love and a lot to be thankful for.

I’m doing fine. And I’m very lucky. Staying safe. I want to give a shout out to Brian, thank you for listening. And everybody else, thank you for listening, catch you next time. Check out the What’s The Matter With Me? Podcast at Whatsthematterwithme.org, on Apple Podcasts and everywhere you get podcasts, you can get it from there. Write me an email, give me a shout out. Use the contact page. All right, what’s the matter with me? Catch you next time.

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