Artist Talk 

     In Hamilton, there’s a program to wrap the public busses with local murals. One bus I recently encountered features Garrett Morgan. Commonly known as the inventor of the modern electric stop light, Morgan’s design included a third light, the middle yellow light – a safety signal. Prior to Morgan’s iteration, the stop light had only two signals – stop and go. Imagine driving in the early era of motor vehicles – before Morgan’s signal which directs the driver to proceed quickly but with caution or stop outright, imagine how dangerous intersections were when drivers were given no warning of an impending change or hazard. By identifying this need, Morgan invention inserted caution into the system to prevent unnecessary dangers. This project also concerns safety signals but of a different sort.

     Dedicated to all those that are suffering or have died because of the COVID-19 inoculations, this project features cases reports from the VAERS database of adverse reactions, specifically deaths, associated with the COVID-19 products which include the mRNA and adenoviral vector vaccines. This quilt, this monument made of fabric measures 15 feet x 25 feet. Its design consists of 260 squares, measuring 15” x 15” sew together to create a discolored and ghostly American flag. The case reports of those who died are of American citizens from almost every state. These individuals were ages 1 – 55 and  died within 0 – 16 days from the time of the products injection. Using the website Open VAERS to research case reports, I identified 487 cases of death of Americans under the age of 55 within 16 days or less of injection with a COVID-19 product. This subset of 487 cases are featured on the squares that create the white stripes of the flag include the VAERS ID number, age and sex of the patient, State in which the patient lived, number of days post injections when the patient died and the date of death. Of the 487 included cases, 234 (48.05%) of these individuals died within 3 days of their injection. In addition to these cases, various case narratives have also been included within the body of the quilt.    

     If you are not familiar with VAERS or the Vaccine Adverse Events Reports System, I’ll give a brief history. Implemented in 1990 and co-managed by both the FDA and the CDC, VAERS is a pharmacovigilance system for monitoring adverse events associated with vaccine products. Some of these products like the polio or MMR vaccines have been in use even before the system was created and have impressive safety profiles. Previously VAERS received around 30,000 reports annually since its implementation in early 1990’s. The current number of reports associated with the COVID-19 vaccines (excluding traditional vaccines for the virus like Covaxin, Coronavac, and Spikogen) is 1,587,565 reports which includes 35,980 reports of deaths. As a reminder, the COVID-19 products were released for public distribution in early 2021 so these 1.5 million reports have been filed within a 2.5 year period. The VAERS system has always been a passive one and cannot directly determine causation. Nonetheless it is an important and useful tool for detecting unusual or unexpected patterns of adverse event reporting that might indicate a possible safety problem like was the case in 1999 when the CDC pulled the RotaShield vaccine from the market after several infants developed intussusception (or bowl obstructions) after administration of the RotaShiled vaccine.

     I am not here to adjudicate the safety of the COVID-19 products. I feel as though that is self-evident from the sheer number of adverse event reports associated with them in VAERS. Instead, what follows is predicated on the belief that these interventions are indeed dangerous. Thus, I will not talk today about the science – the inefficacy of these products or their pathways for creating harm. Instead, I want to talk about precedents, ethics, and rhetoric. When we say something is unprecedented, we mean it has never been done or seen before. If something sets a precedent, it sets an example or rule to be followed. History is full of stories of the unprecedented like the formulation of gravity by Isaac Newton and the subsequent defiance of this force by the Wright Brothers. Equally, history and those wise enough to learn from her lessons, set precedents so as to retrain man’s follies.

     The creation of a transparent system for tracking the safety of vaccines set a precedent for the seriousness given to reports of adverse events, especially those associated with new products. Why have a monitoring system if safety were not a priority? Why care about safety if there was nothing precious about human life? Another data point is always useful, especially if it comes at no expense. But this is not the attitude toward medical human research we had previously established. The ethical precedents for human research are bloody ones, set by the cost of many lives lost and much undue suffering. I’ll give one example from recent history of why we tread carefully when the human and medical or scientific research intersect.

     In 1932, the U.S. Public Health Services agency began recruiting participants to take part in a study being jointly conducted by the agency and a local school in Macon County, Alabama. Over 600 study participants were recruited by the promise of free medical care. Though these men would be seen by doctors, they would ultimately receive no medical care as the actual point of the study was to track the full progression of a disease many of the participants had, which was why there were recruited in the first place. That disease was syphilis and today this infamous story is commonly referred to as the Tuskegee Experiment.

     623 African American men were recruited into the study and two groups were created, a control group of individuals free of the disease and the experimental group comprised of individuals with latent syphilis. In order to track the full progression of the disease, researchers provided no effective care as men went blind, infected their spouses, suffered several health problems including insanity, or died due to their untreated syphilis. Despite the fact that penicillin became available and recommended as the treatment for syphilis in 1947, the researchers carried on unphased, determined to get their data! The study continued until 1972 when Jean Heller of the Associated Press broke the story in the New York Times. By this time, 28 study participants had died from the disease and 100 more had passes away from related complications. 40 spouses were also infected with the disease and 19 children had been exposed to the virus during their births. The public outrage at Heller’s story ultimately helped shut the study down but after 40 years, much grief had been endured. And while surviving participants and heirs received financial compensation for this suffering, the Tuskegee Experiment created a blot on the record of public health, medicine and government unmatched until very recently.  

     When you try to make comparisons between COVID and almost any other historical event, you’ll often receive avid resistance. But comparisons don’t need to be 1:1 for them to be valid and by disallowing this strategy for sensemaking, we do ourselves a great disservice in our ability to gain a greater understanding of how the Pandemic fits into a larger historical picture. The Tuskegee Experiment and COVID have obvious differences and yet, whether it is the 130 dead of the former or the undecided number of dead of the latter, both tragedies are manifest of indifference and great injustice. The 1.5 million reports associated with the four aforementioned COVID-19 vaccines is unprecedented and we set a new precedent by ignoring this signal. By doing so we say, yes the system exists, but we don’t heed its warning. We are comforted by the mere illusion of regulation, not its actual practice. Worse still, by ignoring historical precedents, we expose ourselves to preventable misfortune. 

     On May 16, 1997 the Clinton Administration issued a formal apology for the Tuskegee Experiment. During the ceremony, Tuskegee University was gifted a $200,000 grant to help establish a center for bioethics. The TU National Center for bioethics in research and health care was to be part of a lasting memorial to the Tuskegee Experiment’s victims. I recently read the Belmont Report after visiting the center’s website. Produced in 1979, the report proposes three core principles – autonomy, benevolence and justice – that should “underlie the conduct of biomedical and behavioral research involving human subjects.” The first principle, autonomy acknowledges that individuals should be treated as autonomous agents, capable of making decisions for and about themselves. “Application of general principles to the conduct of research leads to the consideration of requirements.” One requirement I will briefly discuss is informed consent. Informed consent has three components – information, comprehension, and voluntariness. Again in the context of medical research with human subjects, individuals must be presented with truthful and relevant information, this information needs to be present in a way that is comprehendible to the study participant and this individual must be given the opportunity to make their choice – free from both incentive and coercion.

In the experiment that was the past three years, but specifically where the vaccines are concerned, I’d argue most could not truly give their informed consent. Information, especially about the dangers of these products and platforms, was given selectively, slantedly, begrudgingly or sometimes not given at all. Without this information, comprehension was not total thus compromising the integrity of consent. And by no means was the environment free of incentives or coercion – not with free donuts, shot lotteries, and every talking head parroting the tagline “safe and effective” over and over and over again. Let alone the mandates. Given that much of this influence was shaped by our government and public health officials, the latter of which should know better because of the core principles established in the Belmont Report, can we truly say these individuals and institutions were behaving ethically? I don’t believe so.

     During the pandemic, the rhetoric shaped our response, and the sloganeering was superb – “stay home and stay safe”, “together but apart”, “build back better”, “safe and effective!” These taglines made the chaos digestible and our path forward deterministic. Good little soldiers, we all did our part to perpetuate the fear and derision of anyone courageous or brazen enough to be a skeptic. If you dared voice your concerns, you were deserving of being pilloried for not being an expert. It seems so strange to me to live during an era where one of the buzz words of the day is accessibility and yet, simultaneously, the rhetoric when it came to Covid was, unless you are a virologist, vaccinologist, or immunologist, you really have no right to an opinion. And yet, this condescension again, directly contradicts the principle of autonomy that all doctors, researchers, and public health officials are required (at least in principle) to respect.

     The rhetoric of the pandemic was beyond patronizing. Not only did we demonize people for wanting to be informed, we convinced people that they were undeserving of the right to make up their own minds. Discouraged from doing our due diligence, we dutifully dispelled our disquiet, doubting our own eyes and intuition. We should have listened to ourselves. Instead, we abdicated our responsibility to make ethical judgements and were swept up with the madness of the crowd. We listened when told to stay home to flatten the curve. We social distanced and wore masks, set up barriers and sanitizing stations. We closed our boarders, our businesses and our schools. We cancelled sporting events, ceremonies, graduations, funerals, weddings, birthdays, holidays and other important celebrations. And all the God damn Zoom calls! We counted cases on constantly updating chyrons and instituted curfews and the mandates. And when we were told those who resisted even these measures – the unvaccinated – were prolonging our suffering by their unwillingness to take an experimental product, we attempted (and in many countries, succeeded) in barring them from public life. Was this ethical? After all, they were merely practicing their voluntary right to refuse, despite the heavy consequences constructed around them. The rhetoric about the vaccine injured is worse yet, when their plight is acknowledged at all. “Well that type of event is rare” or “maybe it’s just anxiety” are platitudes that give little comfort to the relatives of the dead or those suffering from new or worsening health conditions, and mounting debt and frustration at being gaslit and ignored.

     During the 1997 ceremony to honor the victims of the Tuskegee Experiment, then Vice President Al Gore stated in his introductory speech, “The relentless pursuit of scientific truth is a noble endeavor but not so noble that it exempts us from our deeper obligations to be moral and just, to revere the sanctity of the lives of our fellow men and women.” Are we currently honoring the lives of our fellow Americans who have been injured by these vaccines? Is it moral to demonize, ostracize and censor those who truly thought they were doing the right thing when they voluntarily took these products so as to protect others? This patriotism and protective instinct should not be so easily devalued. Well aimed, these instincts win wars but this time, our compassion was weaponized and now those suffering because of their sacrifice are paying the ultimate price.

     This project took me six months to research, format, print, measure, cut, heat press, dye, clip, sew, trim, and decorate. When rolled or folded, this behemoth weights almost 20lbs. Because of the quilt’s size, as the sections I was sewing together grew larger and larger, I began to struggle more and more with the piece, sometimes quite literally wrestling excess fabric as I moved it through my sewing machine. I was both careful and forceful when feeding the quilt through the needle to avoid terrible puckers and crooked lines; this took much physical effort. And as I worked, I also wrestled with the quilt’s content. Not because I do not believe my own insights or my ability to make them but because I know what this project will get me, and it will be very few thank you’s and a lot of me getting lambasted as an anti-vaxxer. I spent over $1500 making this project and I doubt I will ever sell it. Art usually isn’t lucrative until you, the maker, are dead.      But I did not make this project for money or even because it is particularly beautiful as a thing. It is not. I made this monument, this piece of visual rhetoric because:

•  1. Nothing is off limits in the arts.

• 2. Because the stories of the vaccine injured deserve to be seen and heard.

• And 3. because I can, and because I couldn’t not after listening to stories of the victims of these shots.

This piece does not seek to nudge you or persuade you, only to inform. Its monumental size is deliberate and mirrors the scale of the problem…the problems we face. I will not mandate you engage with it but out here in the public, it cannot be ignored. And should you choose not to look away but instead to look directly at the atrocity in front of you, maybe you will be inspired to utter the most simple of defiances - “these products are dangerous.” If this private intuition can be acknowledged publicly, then maybe one day soon, the victims of this tragedy will finally begin receiving the help they desperately need and deserve. And though this may take a long time, we cannot and should not abandon the vaccine injured. If you do, by chance, begin to question know that doing so does not mean you are a conspiracy theorist. As an artist, I can attest that the most complex and profound images are not merely black and white silhouettes but are indeed a full range of grayscale. Seeing nuance is a skill we should not shun but rather, cultivate.   

     The humanities center around the value of the human and the existence of the humanities depends in part on the desire to tell stories which relate how precious and unique our existences as human beings are. As a near universal event, everyone experienced hardship, loss and suffering during the pandemic. COVID the disease killed, the misery wrought by the pandemic response measures killed and the warp-speed vaccines killed. But I do not often hear people sharing their pandemic experiences. It really seems as though we all just want to forget it ever happened, to put the memories in a steel box in a deep dark hole, and move on but I fear how we will fare if we try this. Without dissecting how the past three years have affected us, I believe the unacknowledged pain that we share will eat as us, making us jaded and resentful. This is why I believe we must share how the COVID era affected us – how we changed and who or what we lost… or maybe gained. This is another motivation for this project – to create a space where sharing your COVID experiences is not merely cautiously tolerated but joyously encouraged and appreciated. And this is what I invite you to do after this talk ends so, let me start you all off.

     One of my darkest moments during the pandemic was in January of 2022. My husband had gotten COVID, despite receiving the J&J vaccine in October of 2021, three months prior to his infection, and while he was sick, I quarantined with our 2.5 year old daughter. After a few days of being sole caretaker for both of my loved ones, I was at my wits end. I remember calling my dad, sobbing because I was overwhelmed, not just with the responsibilities of caring for my sick partner and young child but because I had also watched a recent interview with Noam Chomsky. If you don’t know Chomsky, he’s a well renown intellectual and the famous co-author of the book, “Manufacturing Consent.” In this segment on Primo Radical, Chomsky argued that the unvaccinated “should have the decency to remove themselves from the community, if they refuse to do that, then measures have to be taken to safeguard the community from them. Then comes the practical question, how can we get food to them, well that’s actually their problem.” To be fair, he followed up “of course if they {the unvaccinated} really become destitute, then yes, you have to move in with some measures to secure their survival just as you do with people in jail.”

     I had refused to get the vaccine through all of 2021, when the coercion was at its fever pitch and I thought that if I stuck to my guns, I’d be ok. I am, after all, one of the most headstrong people I know. But after this interview with Chomsky - the man who argued in 1988 that the mass media perpetuates system-supporting propaganda – I was distraught. I didn’t know how I could carry on if I would be barred from acquiring the most basic of essentials – food for my family. And yet, having visited Dachau when I was in my early twenties, I knew that if I did not continue to resist, that something much worse could happen…     

     My best moment of the pandemic is today. Because today marks the official end of COVID for me. I am coming out as unvaccinated and skeptical, and no amount of names will deter me from speaking about the pandemic any longer. I have already received alarming emails and Facebook messages and one of my neighbors even called my boss, I presume to get me fired – from my art job…for my art. But I will not shut up. Because we failed during the COIVD years and denying that does no one any good. While this project is completed and this chapter is finished for me, for so many others – for those with dead loved ones, for those injured by the vaccines, for those struggling to understand the insanity of the past three years, COVID is not over for you. And this is why I encourage you not only share, but also to listen because in unburdening ourselves of some of our grief while simultaneously assisting others in carrying their load, we can begin to see the magnitude of what was done to us and what we have done.