march 25
Hi friends,
Looks like the Senate might pass this coronavirus bill today? Possibly? I guess we’ll see. [Edited to add: it’s happening. I’m sure we’ll see more analysis in the coming days; lots to unpack in a 2.2 trillion dollar bill.]
I’ve been feeling a little frozen over the past few days as discussions of rationing medical care ramp up. As expected, there’s talk of withholding lifesaving treatment from people with complex medical needs. This argument - that doctors should let disabled folks die in the name of “efficiency” - is why we in the disability community were fully freaking out about coronavirus before most people even started paying attention. This is why I despaired as we lost precious time to government incompetence and personal selfishness (incompetence is actually far too generous; this was and is maliciousness). We only had to look to Italy to know this was coming, and the continued catastrophe of our government’s response has been gut wrenching.
Ari Ne’eman wrote an essay on this topic for the New York Times a few days ago that I want absolutely everyone to read. He says:
People with disabilities have a long and complicated history with the medical profession. While many disabled people need ongoing medical care, many doctors view life with certain disabilities as unworthy of living. Disabled people who require ongoing ventilator care and other forms of expensive lifelong assistance are used to being asked by medical professionals if they would rather abandon life-sustaining treatment — often with the clear implication that “yes” is the right answer.
When my friends with some of these needs go into the hospital, even under normal circumstances, those of us who love them try to organize lots of calls and visits. These aren’t just to keep the patient’s spirits up. They are designed to send a message to treating professionals: “Someone cares if this person lives or dies. You are being watched.”
The stakes are always high for disabled people, and they’re even higher now. So what is the right approach? I cannot claim to be an ethicist or a medical professional, but this argument makes sense to me:
Though some insist otherwise, we should maintain a broad approach of “first come first served” when it comes to lifesaving care, even scarce medical resources like ventilators. We certainly should not remove ventilators from those who are already using them in the name of allocating more “efficiently.”
This is a sacrifice — but not so great as some might imagine. Maintaining nondiscrimination does not require hospitals to treat those who would die anyway. Even under nondisaster situations, clinicians can withhold care that is deemed futile — medically ineffective. But those who can be helped should not be given lower priority because of pre-existing disabilities, even those that will require more scarce resources.
At this point in writing, I took a 2 1/2 hour break to chat with a few of my childhood buddies (who are still some of my closest friends) and wow I highly recommend it!!
Here we are tonight, talking about movies and cheese making and whether Alex should get a beehive (yes).
I’ve had some really lovely long conversations with people I haven’t spoken to in a while (at least not over the phone/video chat), and it’s definitely helping my mental health. Seems like all phone calls begin with a certain amount of fretting and ranting about current events and then transition onto other things. I don’t have cute screenshots of all of these calls, but because I’m feeling sentimental, here are a few old photos with friends I’ve had the chance to catch up with this week. Thank you for indulging me and this wild shift in tone!
Because Vinnie still has either a cold or a mild case of coronavirus (!), he can’t come down to LA this week and I’ll be alone for a little while longer. So these phone calls are keeping me afloat, and I am very grateful.
Links, Etc., Coronavirus Edition
My dear friend Emily also wrote an excellent piece on the fears of disabled folks during coronavirus
In the Harvard Business Review, of all places: That Discomfort You’re Feeling is Grief
Bernie going off on the Republicans tonight
From the Transit App: How coronavirus is disrupting public transit (declining ridership means that people are taking social distancing seriously, but it also means that transit needs your political support now and always)
A letter from the American Association of People with Disabilities and 250+ other organizations about necessary policy measures for the disability community in this crisis
My pal Jonathan (the other half of our two person disabled leftist Jews in transportation planning caucus) wrote this great article about the need for more public restrooms in transit facilities
Truly love these videos of Italian mayors yelling at their constituents to stay inside
Links, Etc., Non-Coronavirus Edition
Crip Camp is out on Netflix today! I cried all the way through this film (in a good way). Hilarious, moving, and life-affirming. I promise you will enjoy it.
New Sufjan album is streaming now to soothe your frazzled brain