Excellent piece, Julia. I am outraged at the director calling this “trauma.”
I’d also argue that the officials at this meeting who didn’t mask didn’t commit microaggressions - I’d call that straight-up aggression. If you don’t do a basic, proven, simple act to prevent the people in your midst from possibly dying, then you are an AGGRESSOR.
The message is crystal clear: you people don’t count. Go back in hiding so the rest of us can go to brunch in peace.
Truly astounding that folks who are supposed to be data-driven at CDC, NIAID, etc. ignore the science in favor of some delusional pre-2019 “normalcy” that is anything but. The public health consequences of their dereliction of duty cannot be overstated and will likely be felt far and wide, especially if we allow another 5 years of unchecked transmission.
As if the pre-pandemic "normal" was ever good for sick, disabled or otherwise vulnerable people anywhere. That's nothing to aspire to. Thank goodness for Julia and others who still have the capacity to try to educate the "normals". My energy for it ran out in Year Three of this shitshow. Now I can only engage meaningfully with my very nearest, and with the folks in my ME/LC patient support groups, which continue to grow every day. And on it goes, with no end in sight and no help from the top.
Wow, Julia, I understand your frustration and anger. You sure do like to spin out a monster rant! For me, I would just say that it is incredible that an insensitive asshole like Dr. Marrazzo can be a physician, never mind the director of an NIH institute.
As the panelist at the meeting who made the comment, I want to weigh in and say that Marrazzo is NOT an insensitive asshole who shouldn’t be a physician.
While I am deeply frustrated with her quote on this, I am even more so precisely because she is NOT an insensitive asshole. She has a track record of patient and community engagement in HIV research that is better than most, and throughout the meeting made specific vital commitments to this phase of RECOVER that are very important to getting the answers we need after a lot of effort went to waste under the initial RECOVER leadership.
There’s plenty of people who are otherwise good and ethical about what they do who are off base on masking. We’ve ALL been done a terrible injustice by state-sponsored misinformation and disinformation on masks, and the ongoing trauma perpetuated against disabled people in this pandemic, fueled with the power of deep ableist narratives. I’m not ready to throw people away who are part of the massive majority that aren’t doing right on this, and will be reaching to Marrazzo to discuss further.
Thank you so much for this. Watching them all go unmasked at the conference was deeply demoralizing. I got covid in March 2020 at 33yo. Now 38 and still severely disabled with Long Covid, POTS, MCAS, ME/CFS. Previously an athlete with a big career, I’ve said goodbye to all that, my house, and my city. My mom cares for me. I’m only doing this until I’m 40. Those doctors, researchers, and bureaucrats made it hard to have faith when they read all the comments at the conference begging them to mask and continued to ignore it.
The idea that pre-SARS-2 was just fine in terms of infectious disease is not helpful. HIV transmission has merrily gone on for more than forty years now with over 10,000 new cases annually. The global burden is much greater. Steven Thrasher's book "The Viral Underclass" is a good take on both pre- and post- SARS-2 infectious disease issues.
I find this weird phobia about masks puzzling. People don't seem know that N95 masks were invented long before the current pandemic and were mandated in places like hospital TB wards. They've been used for years in construction and other places where there are hazardous airborne contaminants.
That's a good point. Many of us with ME-CFS developed it years before the emergence of SARS-CoV2, as the result of other viral infections. (Mine was triggered by a flu-like virus 24 years ago.) Those outbreaks were also dismissed as undeserving of serious attention.
As always, Julia, you hit the nail on the head. Brilliant and accurate piece. People want to know why I don't go to doctors or dentists anymore. Because they don't mask anymore. It's a sad, pathetic world we live in. I don't expect anything to get better, not while the billionaire class, their corporations and the politicians whom they fund and control insist that we go back to work, go back to school, but if you get sick or die, too bad for you, someone else will take your place. And the ruling class does invest in ventilation or other mitigations for themselves but not for We the People, the creators of their wealth and power, because they don't want to spend the money. So glad that I am retired and live alone. Many thanks again, Julia, for all you do.
Excellent piece, Julia. I am outraged at the director calling this “trauma.”
I’d also argue that the officials at this meeting who didn’t mask didn’t commit microaggressions - I’d call that straight-up aggression. If you don’t do a basic, proven, simple act to prevent the people in your midst from possibly dying, then you are an AGGRESSOR.
The message is crystal clear: you people don’t count. Go back in hiding so the rest of us can go to brunch in peace.
Truly astounding that folks who are supposed to be data-driven at CDC, NIAID, etc. ignore the science in favor of some delusional pre-2019 “normalcy” that is anything but. The public health consequences of their dereliction of duty cannot be overstated and will likely be felt far and wide, especially if we allow another 5 years of unchecked transmission.
As if the pre-pandemic "normal" was ever good for sick, disabled or otherwise vulnerable people anywhere. That's nothing to aspire to. Thank goodness for Julia and others who still have the capacity to try to educate the "normals". My energy for it ran out in Year Three of this shitshow. Now I can only engage meaningfully with my very nearest, and with the folks in my ME/LC patient support groups, which continue to grow every day. And on it goes, with no end in sight and no help from the top.
Every. Word. Of. This.
Wow, Julia, I understand your frustration and anger. You sure do like to spin out a monster rant! For me, I would just say that it is incredible that an insensitive asshole like Dr. Marrazzo can be a physician, never mind the director of an NIH institute.
As the panelist at the meeting who made the comment, I want to weigh in and say that Marrazzo is NOT an insensitive asshole who shouldn’t be a physician.
While I am deeply frustrated with her quote on this, I am even more so precisely because she is NOT an insensitive asshole. She has a track record of patient and community engagement in HIV research that is better than most, and throughout the meeting made specific vital commitments to this phase of RECOVER that are very important to getting the answers we need after a lot of effort went to waste under the initial RECOVER leadership.
There’s plenty of people who are otherwise good and ethical about what they do who are off base on masking. We’ve ALL been done a terrible injustice by state-sponsored misinformation and disinformation on masks, and the ongoing trauma perpetuated against disabled people in this pandemic, fueled with the power of deep ableist narratives. I’m not ready to throw people away who are part of the massive majority that aren’t doing right on this, and will be reaching to Marrazzo to discuss further.
Thank you so much for this. Watching them all go unmasked at the conference was deeply demoralizing. I got covid in March 2020 at 33yo. Now 38 and still severely disabled with Long Covid, POTS, MCAS, ME/CFS. Previously an athlete with a big career, I’ve said goodbye to all that, my house, and my city. My mom cares for me. I’m only doing this until I’m 40. Those doctors, researchers, and bureaucrats made it hard to have faith when they read all the comments at the conference begging them to mask and continued to ignore it.
The idea that pre-SARS-2 was just fine in terms of infectious disease is not helpful. HIV transmission has merrily gone on for more than forty years now with over 10,000 new cases annually. The global burden is much greater. Steven Thrasher's book "The Viral Underclass" is a good take on both pre- and post- SARS-2 infectious disease issues.
I find this weird phobia about masks puzzling. People don't seem know that N95 masks were invented long before the current pandemic and were mandated in places like hospital TB wards. They've been used for years in construction and other places where there are hazardous airborne contaminants.
That's a good point. Many of us with ME-CFS developed it years before the emergence of SARS-CoV2, as the result of other viral infections. (Mine was triggered by a flu-like virus 24 years ago.) Those outbreaks were also dismissed as undeserving of serious attention.
As always, Julia, you hit the nail on the head. Brilliant and accurate piece. People want to know why I don't go to doctors or dentists anymore. Because they don't mask anymore. It's a sad, pathetic world we live in. I don't expect anything to get better, not while the billionaire class, their corporations and the politicians whom they fund and control insist that we go back to work, go back to school, but if you get sick or die, too bad for you, someone else will take your place. And the ruling class does invest in ventilation or other mitigations for themselves but not for We the People, the creators of their wealth and power, because they don't want to spend the money. So glad that I am retired and live alone. Many thanks again, Julia, for all you do.
Perfectly said. Thank you.