It’s Time for Us to View the Person Rather than the Data: Percival Everett’s “Zulus” and Ben Chapman’s Food Science Studies Viewed Under the Magnifying Glass of Consent By Ashley Boccio

The idea of informed consent, and whether or not it is being administered, is a complex concept that is constantly adapting to society’s ever advancing expectations. As a result, researchers and physicians are continuously evolving their methods of obtaining consent from their subjects in order to better communicate the risks and situations that they are going to be a part of. In a class skype conversation with Ben Chapman, a food safety specialist and researcher, he shared a specific instance in which a research-subject felt that he had not been fully informed of the elements involved in an experiment. Due to the subject’s lack of medical background, he was alarmed when informed after the fact that he was in contact with a “non-pathogenic” bacterium. Chapman, who is well-educated in the medical field, was aware that “non-pathogenic” means a bacterium is harmless to be in contact with. However, the subject was unaware of this definition, and in response acted with anger due to his lack of knowledge on the subject. This enraged response was triggered by the fact that the subject was a caretaker for an individual with M.S.; in being so, he consistently needed to be cautious of the germs that he could bring home in order to avoid putting his family member in harm. In light of this situation, Chapman became aware that he needed to change and review the way he received consent from the participants in his study, and additionally needed to work on making sure the subjects fully understood all parts of the experiment, not leaving any elements up for interpretation. 

            Looking at Ben Chapman’s process in dealing with his research subjects, it is easy to create a parallel to Alice Achitophel’s experience with the rebels in Percival Everett’s “Zulus”. Alice lives in a dystopian, post-nuclear war society, where it is no longer legal to have children. As a result, all women are forced to be sterilized. However, Alice manages to fall through the cracks, failing to be sterilized. In a violent sequence of events, Alice is impregnated against her will, left hopeless and unsure of how to hide her pregnancy from the world (since it is outlawed). Due to these circumstances, Alice places all her trust in the so-called “rebels” and she flees her home to reach a rebel-base outside of the city. Fleeing the city, Alice is unaware of the true intentions that these rebels have for her and her unborn child – yet naively she blindly follows Theodore Theodore and Lucinda Knotes (known rebels) to the base. There are several occasions where Alice is treated like an object/data specimen rather than an actual living human-being, most memorably when she is first examined by the physicians of the base to determine whether or not she is actually pregnant:

“Alice Achitophel leaned back, the lanky man taking her legs and raising them onto the table. The woman unlaced her shoes and removed them while another doctor switched on the examination lamp and rolled it to the foot of the table. The doctors all stepped back, fanning the air and saying “Oh, my. Oh, my” …  her (Alice’s) words went unnoticed, unheard and the doctors continued to make a fuss about how bad she smelled, and one even conjectured that her malodorous condition was a side effect of her pregnancy… “It’s just this woman is filthy…”…They put Alice Achitophel’s naked feet into the holders and stood between her legs, moaning and complaining even more loudly…it was no longer funny and she began to cry out loud, but, like her words, her sobs went without note” (Everett 89-90).

 In this intensely uncomfortable scene, we witness Alice being treated like an animal, wrestled and ridiculed as if she cannot even feel or understand. It is evident that the rebel doctor’s only concern was for Alice’s unborn child, not Alice herself; viewing her as merely a “vessel” that was to deliver the miracle child. As described by Ben Chapman, this is often a flaw in human-subject based studies, as researchers can often become single minded when looking at their subjects, viewing them merely as data on paper rather than actual people with emotions and connections. This fact is at the crux of what causes Ben Chapman’s incident with the subject who becomes infuriated due to miscommunication and lack of understanding. Responding to the situation, Chapman consults the board of his study, and urges that they change the consent/information papers given to the subjects at the beginning of the study. Unfortunately for Alice, the rebel doctors do not share Chapman’s immense concern with obtaining consent and informing his subjects. As a result, Alice is consistently ignored, and her valid questions and concerns are brushed aside, as they are meaningless in the grand scheme of what the rebels plan to do with Alice’s child, a plan that is kept completely secret from Alice herself.

Chapman goes into great detail when describing his method of research, which involves withholding specific information from the subjects in order to remove bias from the study. This method of study is extremely relevant to Alice Achitophel’s situation as Alice is constantly tragically uninformed about the events she is about to endure. This lack of information, and naivety at times in Alice’s case, is what leads to an extreme series of events were Alice’s body ends up encased in a glass box for the world to observe and gawk at like a scientific specimen. This act of being encased in glass reveals Alice’s true worth to the individuals in the rebel base. Rather than treating Alice like a person (where it is the custom to bury the dead), they instead encase her in glass to be observed by all:

“She was in her body, in the Flesh House, set down to just stare at the walls of her insides, at the petrified organs frozen in mid fester…There was so much light, more light than any daytime offered, shining on her and making everything  all to clear too see.. She hoped she would fill the cube with her salty tears and drown her vision away from the view, but she could even live as a severed head, so she would not drown” (Everett 85).

 This is all done horrifically without Alice’s consent. Delving deeper, it is imperative that we discuss how Everett fully attacks and quite literally “explodes” the entire conception of consent by having Alice be ever aware and conscious of what is done to her body, whether she is alive or dead. Although Alice’s body is scattered in pieces after her unnatural, self-explosive birth, her head somehow manages to remain intact. In a nightmarish depiction, it becomes evident that Alice’s head still remains conscious despite being completely decapitated from her exploded body; Alice is able to perceive and interpret everything that is occurring around her, yet she is unable to respond or make remarks to defend herself. This graphic and surreal situation creates a vivid visual of lack of consent that is truly terrifying. Alice is very conscious about the wrongs being done to her, and assaults against her body, yet she is forever unable to consent to or help her situation, never being put to rest.

In discussion, we can compare this situation to the immortal cells of Henrietta Lacks. After her passing due to a rapid cancer, without her or her family’s consent, doctors began using Henrietta Lacks’ ever-reproducing cells for research and medical experimentation. This real-life situation can be compared to Alice’s ever living conscience even after death, her soul never really being put to rest. Looking at it from this perspective, it is impossible not to question the ethics involved with the continued usage of the cells of Henrietta Lacks’ even after her death, her DNA forever living through scientific experimentation without her true consent; just as Alice is forever conscience, left in a deserted world with only the memories and facts that she learned over the course of her lifetime, from A-Z.

How is it that we as a society are so able to put aside an individual, and demean them for our own gain, despite the consequences to that individual or those connected to them? This pattern of non-consensual doings has been repeated throughout time, so much so that several authors, such as Percival Everett, have incorporated these violations into their own literary works. Although “Zulus” is a surreal fiction novel, its concepts and issues can be compared to several tangible real-life situations such as the immortal cells of Henrietta lacks, and even the research studies of Ben Chapman. Just as Chapman recognized that something needed to be improved and changed in his own studies, it is important that we as a society learn to recognize when we need to evolve. Thus, breaking the pattern of seeing merely zeros and ones, when we should be viewing a living human being, with thoughts, emotions, and a free will.

Governmental Deception and Exacerbation of Income Inequality: The Parallel between the American Phoenix Government of Zone One and the Trump Administration

As explained in a previous blog post, Colson Whitehead’s Zone One and Mary Jordan and Kevin Sullivan’s Washington Post article “The Painful Truth about Teeth” similarly illustrate the severity and endurance of social divisions produced through income inequality. In addition to demonstrating the link between economic disparity and social fragmentation, Zone One and the Washington Post article also consider the causes of wealth inequity. One of the primary factors that directly generates economic inequality, or exacerbates it through discriminatory policies, is the United States federal government. By examining Jordan and Sullivan’s article, it is evident that the Trump Administration has betrayed its promise to improve the quality of life for the working-class. Instead the administration has facilitated the implementation of Republican policies that favor the affluent through tax cuts and harm economically disadvantaged Americans as a result of reductions in spending for education and healthcare. Analogously, in Zone One there is a revived federal government, the American Phoenix based in Buffalo, New York, that privileges the political and intellectual elite over the surviving masses. In this way, the Americans Phoenix resembles the Trump administration and Republican controlled congress discussed in the Washington Post article. Thus, both the Trump administration and the American Phoenix government manipulate the public to acquire support, yet then proceed to increase America’s wealth gap by enriching the elite at the expense of ordinary people.

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The Pressing Problem of American Income Inequality: An Analysis of Zone One and the Washington Post

Income inequality is a dire problem that is exponentially worsening in the contemporary United States. Mary Jordan and Kevin Sullivan’s Washington Post article “The Painful Truth about Teeth” illustrates how the widening divide in wealth in the U.S. has led to the inability of working-class Americans to afford much needed dental care. Despite the clear dental health repercussions of being economically disadvantaged, the Washington Post journalists reveal that there are also social ramifications of the income gap in the United States. This dichotomization of the rich and the poor has contributed to the development of prejudice aimed at the economically less fortunate. In response, the economically disadvantaged despise the affluent for their avariciousness and condescending attitude. Comparably, Colson Whitehead’s novel Zone One demonstrates how economic divisions result in the formation of an “us” vs. “them” mindset among both the rich and poor. Although American society disintegrates in Zone One as a consequence of a zombie apocalypse, memories of economic disparity from life before the plague causes socioeconomic tensions to endure. Thus, Jordan and Sullivan’s article and Whitehead’s novel similarly exemplify the social tensions in American society induced by economic inequality.

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Words

In class we discussed how words can be said differently, or have different definitions. Some people may have seen those posts on social media that say things like “Read and read, and you just read those differently” or something close. These memes are popular because it shows us that language is strange, we can read words that are spelled the same way in two different ways. We also can go back to the internet debate on how to say the word “gif”, with a hard or soft “G” sound. There are many words like this in the English language.

In the book Zone One by Colson Whitehead, there are many words that one may not know how to say, such as “defenestration”, the act of throwing something or someone out of a window, or “enamored”, having a liking or admiration. There are also many words throughout the book that many people just did not know what they meant, and therefore struggle to say. An example of this is “Ronkonkoma”, which is actually a place located on Long Island, but the book uses the word to mean some sort of STI. “Ronkonkoma? he asked, holding one of the HR ladies’ licenses. “Had a lump of that on our crotch once”(Whitehead 69). The book takes some words and creates new definitions for them that fit the context of the book.

Words also can be differently said because of geography. We know that in the United States alone there are many different accents that make words sound different, and they are still evolving to this day. Words like “caramel”, “egg”, “tournament”, and “elementary”, as well as many others have different pronunciations. They all have the same meaning, but depending on where you live, you may say them differently than another person from somewhere else. There are many accents throughout the United States, as well as many more across the globe. Many words have the same definition, but different ways of saying them as you travel the world.

In conclusion, words are complex. We may not always know what they mean, or how to say them, and sometimes they even are made up or have made up definitions. Words also can be pronounced differently depending on region. Words will always be a complex thing in our world, as they are necessary to communication. Words are needed in a functioning society, even if they are pictures, it is still a means of communication.

Changing Perceptions: An Examination of the Commercialized Structures of Pharmaceutical and Medical Volunteer Companies

While I usually prefer to write blog posts in the third person, I’ve decided that, given the immense relevance of this post’s topic to my life, it would be best to convey my thoughts directly through my voice. I was similarly intrigued by the epilogue of Harriet Washington’s Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present and Irmgard Bauer’s article “More harm than good? The questionable ethics of medical volunteering and international student placements.” My personal interest in these texts was due to my intention of enlisting in Doctors Without Borders after graduating from medical school. This has been a dream of mine since transitioning from an adolescent education major to premed about two years ago. Even prior to beginning on the premed track, I aspired to work in the international aid/development sector, most likely for the United States Agency for International Development. However, after reading the epilogue Medical Apartheid, I no longer have any desire to work for a government that permits research firms and pharmaceutical companies to exploit Africans as test subjects. Despite assertions of philanthropy from research and medical-volunteering corporations, the texts indicate that these companies are capitalistic and commercialized. Thus, Washington and Bauer provide insight on the condemnable activities of avaricious companies that profit off citizens of the developing world with immunity from U.S. governmental intervention.

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Group Projects Aren’t Always That Bad.

Group projects have always been my biggest nightmare. In my experience, in college and in high school, one person is always left doing all the work, while everyone else just gets to put their name on it. In almost every group project, I have always been the one stuck doing all the work. 

My senior year of high school we had to do a project in government class where we had to come up with a make-belief island and choose a form of government to rule that island. It was a fun project, we got to draw up the island, make up a flag and a name and choose our imports and exports. I was excited about this until I got my group. They notoriously did not help in group projects and just rode the wave while someone else did all the work. As we started working we were given in-class time to complete this so we had a time when everyone could meet up and there was no excuse to not help. HOWEVER, I received no help on this project, even with the in-class meeting time! It put me in a hard spot because I did all the work and I didn’t know whether I should let the teacher know or if I should just let it go. I chose to let it go but after that group projects had a bad taste in my mouth, and I had yet to have a group project prove me otherwise.

So naturally, when I found out we were doing a group blog post I was dreading it. Right in the thick of my semester with all my papers being due, I was going to be stuck doing a group blog post alone and letting other people ride the wave that is the grade. 

I was wrong. The group that I was in for our group blog post was amazing. There was no one person doing all the work, but instead, we all split up the work and did our own part. We spent one day coming up with ideas and supporting quotes, all getting on the same page. The next day we all wrote our own paragraphs while still consulting and running things by each other and helping to edit for each other. We often bounced ideas off of each other so we were able to have one cohesive blog post where each paragraph flowed into the next. Everything worked nicely together. The last day we met we all edited the blog post TOGETHER. There were times when we all didn’t agree on what was being proposed, and we often didn’t agree on the wording of things. However, we still managed to stay respectful, even when we disagreed on things. We were able to compromise without hurting our blog post. It was a nice switch up from what I was used to with group projects. 

This project has taught me something very valuable that I plan to bring with me to future projects and future jobs. This has taught and showed me that even if you have a big group with different views, the assignment can get done in a timely manner. It is a whole new level of respect and teamwork that due to previous experiences I had never experienced. I feel as though this is something I can write on my resume for future employers to illustrate to them that I can respectively work in groups with people who have different views from me. 

Humanity in Morrison’s Home

Our Alondra Nelson reading made me want to revisit Home due to the fact that both texts deal with burial. The one thing that was left unanswered for me at the ending of Home is the significance of the line that caught my attention the most: “And they stood like men” (Morrison 5). Frank narrates this in the opening chapter when he speaks about his memory of watching horses in a field with his sister, Ycidra (Cee). Frank says that, although he and Cee also witnessed a violent burial, all he remembers from the field that day were the horses: “I really forgot the burial. I only remembered the horses. They were so beautiful. So brutal. And they stood like men” (Morrison 5). When I read it, I knew that the description of the horses held some type of significance; I just didn’t know how or what. After our Nelson reading, I think I’ve managed to put things into perspective.

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Parts to a Whole

When one hears the word epidemic, highly negative connotations arise. Words like fear, widespread, and contagion surface in our minds. These connotations primarily reference the group affected, or soon to be affected, rather than specific individuals facing the illness. An epidemic makes us question the whole and how it will suffer. We do not normally consider the individuals’ losses as they become just a small part of the equation. However, it takes just one individual, one part of the epidemic, to spread the illness exponentially, so how does one not focus on the selective parts of this whole? What happens when we analyze the specific people that are a part of an epidemic?

In the text, Clay’s Ark, by Octavia E. Butler, it is seen that a group of individuals who have ventured out to space had contracted an extraterrestrial disease through the form of a parasitic organism. The symptoms that arose from being infected with the organism drove the individuals who survived to return back to Earth in order to infect others (Butler, 457). Only one infected person survived the attempted crash of the ship, and despite the horrific landing, the organism drove him to survive in ways not humanly possible. This one individual comes into contact with an isolated group of individuals and in turn, they all become infected. The epidemic begins, and with the amount of humanity remaining in those infected, they devise a plan to keep themselves contained. However, even with keeping themselves isolated, they still give in to the organism’s ability to drive them to infect others. They conduct this process in a controlled way, infecting a few individuals at a time to keep reproduction occurring. Those newly infected struggle with the reality of having to remain isolated and a part of the group that spread the disease to them. Before the organism took full reign on the freshly affected individuals, they attempt escape, risking the spread of the illness, but driven to protect their desire to be free.

Upon this situation and plot of the text, I question the difference in emphasis on the individuals’ a part of the whole versus the whole itself. What value should be held to a higher standard? The individuals’ drive for freedom while risking the inevitable spread of an epidemic or the containment of those infected in order to protect the whole? In either instance, something must be sacrificed, and both question morality. One may consider it more ethical for those infected to force themselves into isolation, even if it means suffering from the side effects of the illness and giving up their freedom. In this case, the disease would not spread without external forces as those infected would refrain from any contact with the outside world and eventually pass away. At that point, once they all are deceased, it would be assumed that the disease dies with them, ending any chance of a full-blown epidemic. However, this style of life may come across as meaningless to some, as those isolating themselves sacrifice their freedom to leave isolation and any chance of experiencing the rest of the world. On the other hand, if those infected practice their freedoms and leave their isolated premise, an epidemic is guaranteed to occur, resulting in the harm of many. In this case, those with the disease do not personally face any restrictions as they go about their normal lives, that is, as normal as it can possibly be while being infected. Upon this freedom, they put a much larger whole at risk. This situation does not only apply to this text where a group is infected with an extraterrestrial disease, it can also be relevant in today’s world.

In terms of the medical field, this questioning of personal gain versus protecting the whole can be applied to many of the experiments we have read in our course through the text Medical Apartheid by Harriet A. Washington. Throughout the book, researchers take away individuals’ freedom and consent through unethical experimentation to obtain data they believe may help a greater whole.  In one experiment, doctors injected a man who they presumed to not make it through the night with plutonium (Washington, 216). They did so without consent, and they hoped to soon autopsy him after the injection in order to learn more about the radioactive substance’s effect on the human body. The man survived, and escaped the hospital upon learning what the doctors had done. His freedom was stripped for the rest of his life as the radioactive substance would never leave his system. To this day, experimentation like this exists, where the individual’s freedom is sacrificed in the belief that it will benefit the greater good. The question posed earlier instills, and I ask you readers, where must sacrifice be made, and how does one overlook the individual’s role in an epidemic?

Blame Game

In the novel Clay’s Ark, Octavia Butler challenges readers by presenting them with conflicts that are of serious magnitude to the human species existence. In particular, the conflict at the center of the story is the extra-terrestrial disease, which infected Eli who returned to earth from the space mission to Proxi Two. The existence of humans is at risk if the infected go around others because an epidemic would be inevitable with the disease symptoms not presenting themselves in the early stages (Butler 497). The first part of the book makes it difficult not to blame the infected for this life or death conflict, yet as the book gets near the ending, a reader’s perspective is liable to change to the opposite view.  The diseased individuals refusal to seek treatment is rationalized by iatrophobia because the medical system fails to care for black individuals health needs in a safe and informed consensual environment. Therefore, the blames shifts from the diseased to the medical institutions.

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Stockholm Syndrome in the Literature: A Technique of Questioning Our Own Morality

As you may know from life experience, people can bond over stressful situations: from being in a hard class to being on the same sports team, shared struggles often serve as a catalyst for the formation of stronger relationships. The two situations I have mentioned are examples of eustress, or stress with positive effects, however bonds can also be formed by more damaging forms of stress coined as distress. A well-known example of the latter is the infamous Stockholm syndrome, which I will begin to explore later in this post. In Octavia Butler’s novel, Clay’s Ark, the experiences of characters seem to parallel that of Stockholm syndrome. However, as Butler often does with her work, we come to notice that this may only taking place at the surface level; upon deeper examination of the what Stockholm syndrome is and comparing it to the experience of the novel’s characters, we begin to realize that perhaps their captors, and their ideals, are not as evil as we may originally think. This makes us as readers question both the morals of those in the book and in our own society, as well as how we can approach changing this.

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