Navigating disabilities, vaccine mandates, and the next wave of chaos

I’ve continued my pandemic stress hobby: hiking alone in local nature preserves while listening to music. On this particular day, I managed to get a pretty nasty sunburn, but the views were nonetheless worth it.

Reposted from Medium. Link to original story here.

Because I’ve spent the majority of this week buried under medical paperwork — and because I’m rather tired of being regarded as “stupid,” “selfish,” “a danger to society,” “morally lesser,” “worthy of ostracization,” etc., simply for having multiple disabilities, one of which is an immunological condition — I spent some time this morning writing up a response to Will Leitch’s recent piece, “Being an Unvaccinated American Is About to Get Difficult. Good.” If you’re like me — chronically ill and informed by your doctor that you cannot receive a COVID vaccine — you’ve probably, like me, experienced a lot of distress over the past few days, as the CDC’s abrupt reversal on mask recommendations has led to an outpouring of anger against Americans who have yet to be vaccinated against COVID, regardless of their particular reasons. As evidence mounts that, in the face of the new delta variant, breakthrough infections might not actually be all that rare, employers and businesses are digging their heels in, tightening restrictions on unvaccinated employees and customers. Meanwhile, many of us in the chronic illness community who are unable to receive a vaccine are left wondering if (or when) new discriminatory restrictions will leave us with fewer rights in a post-pandemic America. Inflammatory language from folks like Leitch certainly isn’t helping.

Because my comment on Leitch’s piece has been getting a bit of attention, I’ve decided to repost it in full here. I’ve made a couple of minor edits, but otherwise have attempted to preserve the scatterbrained character of the original, which I typed on my phone hastily in a Whole Foods parking lot:

“Unfortunately this is yet one of the many alarming, ignorant, and anger-infused takes on this issue I’ve read over the past few days. There are plenty of persons like myself who can’t get vaccinated due to serious pre-existing conditions, as well as a lack of safety data for people with certain pre-existing conditions who wish to make an informed decision. For myself, my doctor has told me that, due to an immunological issue that affects my nerves, I’d more likely than not end up with long-term brain damage from any one of the currently available shots. I’ve already had COVID twice. Just this week I had to pay a $350 medical bill — not covered by insurance — just to get medical exemption paperwork signed, in the hopes that my employer (who also controls my education and has the power to evict me from my housing) will be so benevolent as to allow me an exemption to their employee vaccine mandate. I’m in a highly populated area and assume that requirements for verification will soon be a thing to access certain types of businesses. Will they make exceptions for chronically ill people like me who already have some immunity due to prior infection? Probably not. NYC is currently not making such exceptions, and this is already sending shockwaves through the chronic illness community as people grapple with the decision of whether to risk their long-term health against medical advice, or be excluded from society.

“Many unvaxxed persons in NYC are Black or Latino. Some have medical conditions that prevent them from receiving a vaccine. While early data indicated that the vaccines were relatively effective at preventing infections associated with the original COVID strain, it appears that the tables are starting to turn, and not in our favor. The delta variant is more transmissible and does infect vaccinated persons. How many vaccinated persons? And how seriously? This is data we are still waiting on. But this is why attempts to make vaccines against some other coronaviruses were futile in the past: coronaviruses mutate very rapidly. I anticipate that more data will come rolling in over the next few weeks, and we’ll get some more answers about whether or not the current vaccines are effective against delta, or to what extent, or how easily vaccinated people can spread it. In the meantime it seems safe to assume that anyone who’s infected can pass the virus to another person, regardless of vaccination status. If it’s true that vaccinated folks are suffering a lot of breakthrough infections due to delta (and I know some vaccinated folks who’ve been infected recently), then the scientific basis for vaccine mandates becomes more and more shaky. If vaccinated folks can still pass delta to each other, then requiring proof of vaccination at certain locations isn’t going to stop superspreader events. Rather, it’ll just segregate society into two groups: vaccinated folks who are predominantly white and higher-income, who had vaccine access first due to privilege, and who now have access to society without safety barriers; and unvaccinated folks who are disproportionately people of color and/or disabled or chronically ill persons who cannot safely take a shot.

“The CDC should never have lifted the mask mandate when they did; the quick reversal has led to a lot of backlash [from] self-righteous vaccinated folks who, somewhat understandably, are angry that they didn’t get the “deal” they were promised. While a lot of folks who got the shots claimed they were doing so to protect coworkers, friends, and family, selfishness is now rearing its ugly head, as it becomes obvious that many folks only took the shot on the promise that it would allow them to return to normal, confer special privileges on them, make them look morally superior to those “ignorant” unvaxxed folks, etc. But instead of directing their anger where it belongs — at pharmaceutical companies who made promises they couldn’t keep, at the CDC for flip-flopping on basic safety regulations — they’re taking their anger out on unvaxxed folks. The justification they give is that, if we had just reached “herd immunity” before delta broke out, we’d be done with the pandemic right now. However, from the start, the evidence for that assertion was rather shaky. Vaccines themselves were always going to push the virus to [evolve] and become better at evading the vaccines, because that’s just how a selective advantage works, evolutionarily speaking. It’s unclear whether there was ever truly a magic herd immunity threshold (be it 70%, 85%, 90%) we could’ve reached to prevent the virus from circulating. At the very least, even if we had higher vaccine uptake now, that wouldn’t have stopped delta from becoming the predominant variety of COVID in the US. And if delta can infect vaccinated people, then no amount of vaccines can or could’ve changed that. It was always going to become a problem, sooner or later. Again, high mutation rates are just a key problem with trying to make vaccines against coronaviruses.

“As someone who has studied how private interests (e.g., pharmaceuticals) alter experimental designs and statistical analyses in order to make their products look more promising, and therefore more likely to gain FDA/EPA/federal approval, there’s a lot I could say about the approval process for these particular shots. At the very least, it’s extremely ignorant and childish to simply demand that the FDA give the drugs full approval, immediately, because that’s what you [Leitch] want. Despite the fact that FDA approval is often a shoddy process ridden with conflicts of interest, it exists for a reason; without these processes in place to ensure safety the risks to American patients and consumers would be far too high. Even still, a lot of the data that Pfizer has submitted to the FDA for consideration for full approval is incomplete in many ways. For example, their statistical analyses showing efficacy were conducted before the delta variant became the dominant variant in the US; so just because the FDA deems the shots effective based on the submitted data does not mean they are effective against delta. Persons with certain health conditions were excluded from clinical trials, and so there’s currently no data to show whether the shots are safe for them. A lot of bizarre endocrine side effects in women were missed during clinical trials because all the women in the trials were required to take birth control. Etc. All of this data will eventually exist, but it does not exist now. Plenty of unvaxxed people are waiting on full FDA approval, or on the arrival of additional data to show whether the shots are safe for someone with their condition.

“All things considered, the view expressed in this article seems to be short-sighted and fearful at best, and elitist and bigoted at worst. Unfortunately this seems pretty par for the course, in terms of the righteous indignation I’ve observed online this week regarding the new CDC announcement. Sigh.”

Some folks have responded to my comment, saying that they likewise have chronic conditions that make them ineligible for COVID vaccination, and that they similarly have been alarmed about the uptick in angry outbursts against folks who will not, or cannot, receive a shot for a variety of reasons. Of course, we represent just one side of the disability coin: on the other are the immunocompromised, many of whom are eligible to receive vaccines but unlikely to produce antibodies, and for whom attending public events during COVID is dangerous or impossible regardless of their vaccination status. If we as a society fail to stamp out COVID, they too will be at higher risk of injury or discrimination in post-pandemic America. I anticipate that the next few weeks will be a defining moment in the history of the pandemic. If more evidence emerges that the existing vaccines do not provide sufficient protection against the delta variant, then we as a society will have to make choices. Will we choose to implement widespread vaccine mandates, leading to a segregated society in which unvaccinated people — disproportionately disabled, Black, and Latino — are left excluded from events and venues, even if vaccinated persons can still pass delta and contribute to superspreader events? Will we justify avoiding another lockdown by normalizing the amount of death and disability that another major wave could leave in its wake? Currently, there are few good data and even fewer good answers. Whichever path we take from here, it appears that disabled folks will be thrown under the bus.

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