I Got in Trouble on Facebook; I Hope It's Good Trouble
Or, How to be an Ally to the Disability Community on this, the International Day of People with Disabilities
Yesterday, for the first time in thankfully a very long while, I got into a bit of a Facebook debate with a physician friend. It started after I posted this screenshot from Twitter:
I should say that I’m not currently disabled, though I have some health issues and am at high risk for COVID, which is disabling people at an astounding rate. I do, however, have some proximity to people who are disabled, both professionally and personally. My work involves assisting disabled individuals as they seek to remain independent in their own homes. My wife’s work as an RN involves advocating for the most medically fragile children as their families navigate an impossibly complex and profit-driven medical system. I have disabled members of my extended family. My mother was disabled before she died. Not least of all, my son was born at 24 weeks, 3 days gestation and spent four months in the NICU before coming home. Many preemies born later have faced profound medical challenges in their life. That is not the case for my son, but it might have been.
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So I try to pay attention to what’s happening in the disability community and use whatever voice I have to be an ally. It’s always been true that those of us who are not currently disabled are just one illness or injury away from becoming so if age itself doesn’t lead us there. As I mentioned above, COVID has changed this dynamic profoundly, and we are all just one (even asymptomatic) COVID case away from becoming disabled ourselves. So if one needs a selfish reason to care about the disability community and the course of the pandemic, there it is.
I say all of this because my friend on Facebook took issue with the assertion that the public was being gaslit about the severity of the pandemic. For those who care to pay attention, however, the conclusion is inescapable. A Scientific American piece from June of this year has this headline: “Bad COVID Public Health Messaging Is Blocking Our Path to a ‘New Normal’.” An earlier piece from January of this year in Forbes asserts that “Mixed Messages And Sudden Policy Changes Sow Confusion, Opposition To Covid Guidelines.” The head of the CDC confessed that current mask guidance is based not on science or what’s actually in the interest of public health, but rather on what they think “people can tolerate.”
The Scientific American piece describes mixed messaging and ineptitude if not outright gaslighting:
The COVID-19 Community Levels assessment issued by the CDC is an example of a whiplash change in messaging that confuses more people than it helps. At the end of February, the CDC switched overnight from a tool focused on new infections to one that relies primarily on hospital admissions and occupancy. As a result, many counties that were previously high-risk zones suddenly became low-risk. The agency added new recommendations for behavior to these altered ratings. For instance, it no longer recommends masking indoors for medium-risk counties. The change seems hard to justify: there is a delay of three to 10 days between symptom onset and hospitalization, one 2020 study reported, and this causes a consistent lag between spikes in reported cases and the consequent increase in hospitalizations. With new cases poorly tracked and their trends deemphasized, the new system will be much less useful for everyday decision-making about getting on a bus or train or going into a crowded office.
Worse, many of these CDC recommendations leave decisions completely up to personal and idiosyncratic judgements. Visit any gym in the country and you’ll find members taking care to disinfect treadmills and weights, even while exercising without a mask in poorly ventilated spaces. These poorly protective behaviors reflect CDC messaging. Agency messages place vaccination and masking at the top of their list of preventive measure lists, but do little to differentiate the importance of these measures from those that matter far less, such as cleaning surfaces. The CDC still does not clearly recommend the use of N95 and KN95 masks, even though robust evidence for the superior effectiveness of N95s was available for years before the pandemic began. Instead the agency equivocates, emphasizing comfort and stating people should “wear the most protective mask you can that fits well and that you will wear consistently.” In January of this year, the agency finally clarified that N95-type masks types are more protective than others. (Early in the pandemic it had warned Americans away from these masks because of concerns about supply shortages for medical workers).
Any clear-eyed view of public health messaging under the Trump administration cannot avoid the conclusion that there was intent to minimize and obfuscate the emerging facts about COVID, as Trump infamously ascribed the cause of rising COVID cases to the fact that we were testing for them. Those of us who expected the Biden administration to handle COVID better and voted accordingly must be equally clear-eyed. The day after Biden took office the U.S. had approximately 24.82 million known cases:
Yesterday that number had grown to 98.96 million known cases:
Of course the pandemic started near the end of the Trump presidency; so it stands to reason that there would be more cases under Biden than Trump, but what matters to me is that the trajectory seem largely unchanged. It’s complex of course. The virus has changed and continues to do so as it grows ever more transmissible over time. But if, for example, there had been clear public health messaging about the truth that COVID is airborne and that masks can reduce transmission from the start of the Biden administration, perhaps things might have gone differently. This is from May 2021, just months into the Biden presidency:
The damning truth is that we’ve known for a long time that COVID is airborne and that universal (not just one-way) use of well fitting, high quality (N95) masks reduce transmission. It’s also become increasingly clear that, as Jessica Wildflower so helpfully reminds us:
You can catch Covid multiple times.
Reinfections are common, not rare.
Breakthrough infections are common.
Covid can kill you months after you recover.
It can cause brain damage.
It can cause blood clots and heart attacks.
It doesn’t spare children.
Vaccines help, but only some.
Please check out her piece linked above in which she lays out and links to all the research demonstrating the above. She concludes:
The evidence is overwhelming now.
Last winter, the media made a concerted effort to convince Americans that Covid had become mild. They said catching Omicron would protect us from future variants, and that we could ditch our masks. Newspapers were filled with op-eds basically telling us to go out and shop, celebrate, and get infected. They blanketed the internet with stories about the “relief” people felt catching Covid.
Anyone who disagreed got labeled a doomsayer.
The optimists were all wrong.
There was no evidence to support any of these myths, just arrogant assertions from the same handful of pundits. The actual studies tell the truth. You don’t want to catch Covid once. You certainly don’t want to catch it multiple times. We should be getting boosted. We should be wearing masks.
We should be protecting our children.
There’s only one alternative, and that’s catching Covid over and over until it destroys our immune systems, along with our hearts and minds.
Nobody wants that.
Jessica rightly asserts that the media has been lying to us, but I’m afraid it’s more nefarious than that, my physician friend’s disbelief notwithstanding. Our own government has been gaslighting us too. The COVID-19 “Community Levels” debacle should make that apparent. And this gaslighting is dangerous. It led my doctor friend to assert that
…it’s hard to see that the government is “gaslighting” people on the severity of the pandemic. Objectively, it is not as severe. Hospitalizations are WAY down, deaths are way down, and we are not seeing nearly the long term complications from recent infections that we were initially.
In truth, according to the Surgeon General thankfully telling the truth, hospitals are actually filling up:
While it’s true that the excess death rate is down of late, we’re still seeing 2% more deaths than would be expected, and the fact is that like so much reporting about the pandemic, death data lags and is likely incomplete:
Moreover, any number of deaths from a disease that sound public health policy could largely mitigate the transmission of is too many, and the number of deaths is not small:
I doubt that the families of the 2600 people who died in the week ending just before Thanksgiving would be grateful that COVID deaths are relatively down.
It is demonstrably NOT true that “we are not seeing nearly the long term complications from recent infections that we were initially.” As recently as July STAT was talking about the CDC’s estimate that 1 in 5 COVID patients have developed Long COVID. That is a staggeringly high number of people being disabled by the pandemic, and that is worth drawing attention to, especially today. Today is the International Day of Persons with Disabilities. The UN says that:
Today, the world population is over 8 billion people and more than one billion people, or approximately 15 per cent of the world's population, live with some form of disability; 80 per cent live in developing countries.
I started this piece writing about my proximity to the disability community, and I know that if I live long enough I may very well count myself as part of that community at some point in my life. As someone living with Complex PTSD, that day may come sooner rather than later; who knows? So what’s one small thing we can do today to be an ally to people with disabilities? It’s as simple as it is inexplicably political: wear a high quality, well fitting mask at all times in public. Whether or not we think that we ourselves will ever get COVID or long COVID or whether we hold onto the naive hope that our case, if we get it, will be “mild,” the fact is that in all our interactions in which we draw physically near to other people, it is not unlikely that if unmasked we participate in chains of transmission not only of COVID but of flu and RSV and who knows what else. And even if we and everyone we know remains perfectly healthy, at some point that chain of transmission we (even if unwittingly) participated in may very well lead to someone’s illness, disability, or death. I want to be very clear not to place any value judgment on the fact of someone’s disability, as someone’s disability is not a “problem” to be “solved.” Rather, those who live with disability are people to be loved and included. As COVID poses a much greater risk to the disability community than those who aren’t already disabled, one of the most loving and inclusive things we can do is wear a mask to tamp down community transmission and make public spaces as safe as can be for everyone. Won’t you do your part?
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Thanks for sharing ! I appreciate the thought and time you put in this journal.
I also think your a good Ally.
However, I consider you disabled. I have PTSD, and it’s very debilitating. PTSD can be a umbrella term for my ADHD and low bipolar/ depression/anxiety. Aside from those mental challenges, I've recently been diagnosed with MS. These issues can be considered invisible diseases , which are becoming a majority of the disabled community in recent times. And probably a new generation will come to be traumatized by Covid and civil unrest.
Something I've also been considering is: I've seen the delayed development of young adults in my classes from isolation after the shutdowns. So, at the moment I find it hard to balance an ounce of prevention is worth a pound of cure with social isolation. We all have much to learn. I appreciate you.
Let's also consider, low income, (most disable ppl are) which intersects with disabilities and we do not have the privilege to go where we want to go to where it is safe.
Furthermore, recently, I’ve learned much about internalized ableism, and how sometimes I go along to Get along and downplay my disabilities for temporarily able people. Though I feel shamed (not your intention) that I've gone along with the recent Covid restrictions, especially at school, this journal has me reconsidering my relaxed attitude of late.