Literature by Octavia Butler is quite digestible in terms of its format and the language it employs; however, as we have discussed in class, the underlying meanings of her work are anything but simple. As an author, Butler continually puts readers in situations in which they are forced to recognize and challenge any preconceived notions they may have. In the novel, Clay’s Ark, Butler does just this: she writes what appears to be a typical zombie apocalypse novel. However, beneath the surface the infected individuals in her novel are being likened to bacteria. This analogy serves not only as a commentary on antibiotic resistance, but also as a warning regarding the current and future decay of our society—as well as an inkling of hope for reversing it.Continue reading “Bacteria and Books: An Analogy of Antibiotic Resistance in the Literature”
In 1961 Fannie Lou Hamer went into the hospital to get a tumor removed, she left unaware, that she had been given “a Mississippi appendectomy” without her consent (Medical Apartheid pg. 109.) The loss of autonomy in situations like this were not uncommon during the 20th century when the eugenics movement was on the horizon. During this movement people who were of a specific “racial hygiene” as well as the poor, feeble-minded, and uneducated (Medical Apartheid pg. 191) were sterilized without their consent in hopes to lower the amount of children born with bad genetic profiles. As a result black women were disproportionately forced to undergo either temporary or permanent sterilization. By 1941, 70,000 to 100,000 Americans had faced forced sterilization, long before the same would happen to Fannie (Medical Apartheid pg. 203). This loss of autonomy meant not only the loss of generations, but also a loss of identity to those who wanted to be mothers. The lack of any consent at all meant many women lost the right to choice over what happened to their body. This act dehumanized them by making it so they were not offered the same protections as other’s of different classes and races, making it seem as if they did not deserve the protection informed consent offered other people.
Yet, this was not an isolated moment in the medical community. Between 1944 and 1945 the AEC supported more than 2,000 experiments involving the use of human subjects to test the effects and nature of radiation (Medical Apartheid pg 218). Many of these experiments involved a lack of informed consent and therefore a loss of autonomy. Take the case of Ebb Cade who had large doses of plutonium-239 into his body after surviving a deadly car accident. Unexpectedly, Cade survived but because of this he had some of his teeth pulled, chips of his bones taken, and had to stay longer. Cade never consented to any of this and therefore had no choice in the matter (Medical Apartheid pgs. 216-217). This loss of autonomy once more dehumanized people by leaving them with no control over what happens to their body.
The idea of having a lack of autonomy arises in Octavia E. Butler’s book Clay’s Ark. In this story a doctor by the name of Blake, along with his two daughters Rane and Kiera are kidnapped and exposed to a disease without their consent. Without being told what exactly could happen to them, they are separated and infected. This, especially in the case of Blake and Rane is explicitly the opposite of what they wanted. Blake protests what is going to happen to him, and is continually looking for a way to cure the disease. This is seen in Blake’s thinking, “He had to find something he could use against them.” (pg. 495), or in how Blake uses his doctor’s bag to examine Meda, hoping to find out more about the disease. However Meda “permitted him to examine her” (pg. 495), despite the fact that Blake did not permit to being infected. This shows that Meda understands the idea of consent, but ignores it when Blake refuses to give it. Butler is giving commentary on how consent can be taken from people when others believe they have something to gain from exploiting that lack of consent. In Meda’s case they gain more people in their community and quiet the compulsion to spread their disease. In the cases in Medical Apartheid the exploitation of people was due to racist beliefs and the idea of furthering medical advancements. Yet, the results remain the same, by taking away one’s bodily autonomy one is dehumanized and stripped of being able to make the right choice for themselves. The act of dehumanizing someone also allows for the precedent to come into place where people are easily cast aside, as dehumanizing becomes an age old practice. As Eli and Meda kidnap more people and their community grows, it encourages the practice. The same thing happens when doctors are found to be justified when doing sterilizations or experiments without a person’s consent.
Some of our strongest abilities are weakened with the sight of fear. Being frightened is indeed an experience. We are a society that adores fear. We thrive off of it; creating terror movies, the influence of shows like Fear Factor, and the media’s portrayal of it. Yet others find it horrifying to leave their homes, to walk down the street; to live. Fear is experienced by many, but only defined by few. Fear is a bodily reaction to stressful stimuli and ends with a release of chemicals that triggers a response. Fear is a feeling we’ve all dealt with before, but have trouble processing this emotion when it happens. Similar to Alice Achitophel in Zulus, fear is something we can’t control, however, we try to find solutions to fight this reaction. We try to find different ways to cope, find people to confide in, but ultimately, this feeling can overcome your psyche.
In Percival Everett’s Zulus, all characters are drowning in fear. Fear of life and death. These characters who are mostly women, deal with a devastated post-apocalyptic world doomed to no return. People are undeniably scarred by an environmental catastrophe making all women unable to bear children. All except for one: Alice Achitophel. In her attempt to grapple reality, she must decipher what’s real from what’s not. Whether her reality is real or not. Readers, like myself are taken into the lamentable life of Alice, an obese government clerk, rejected by society, and the only fertile woman in her world. Alice is both insider and outsider in a world where state violence transforms life into a dystopia. On this dying planet, Alice must cope with being grotesquely obese (considered by her peers), impregnanted, alone, and afraid. And like many of us (and Alice), we too, have our own dealings to cope with, still facing daily pressures: our happiness, health, and the little voice inside our heads.
There have been many instances where Alice felt daunted and uneasy during her journey in Zulus. It is a feeling that often encompasses Alice, facing the dichotomy of her feeling helpless as she was raped by a stranger (and later impregnanted) and how pivotal it is that she’s “giving birth to the first child in twelve years”. (Everett, 102). She was burdened with nightmares because of this fear. In Chapter H, Everett references her screaming in her dreams. She heard a voice yelling at her claiming that she knew ” [Alice] was infected with a child. I will catch you and kill you. You are not two lives, but half of one” (104). Earlier that day, she had an incident with Rima (a camp resident) who scorned her about being pregnant saying those same words, “I will catch you and kill you”. Post-war, it was unheard of to be a woman and fertile. Alice Achitophel faced people who hated her simply because she was an anomaly, a pregnant and obese woman. Their fear of fertility surrounded Alice because she was different. She wasn’t the norm they adapted to.
She realizes that she is the fate of the planet, but when most around her don’t understand her “condition”, she was hopeless. As said by Alice, “she knew she had no home to which to return, no friends to save the ones who had brought her here, and no hope save what these strange and unknown people offered her” (Everett, 90). She knew she was an outsider.
Alice had a choice. She could’ve chosen to kill off of her child to be accepted by her society or have a healthy baby, with the formidable task of being the only fertile woman alive. Alas, Alice chose herself. In Chapter W, we find that Alice finally welcomes the atypical; her having a child that was a product of rape. Throughout the novel, she battled with this, however, she was the hope of her dying world. She realized her offspring was “a living, breathing child that she could not let go. It was [her] child, a life”. (Everett, 243). I can’t relate to Alice’s experiences entirely, but I can personally understand the feeling of being overcome with anguish. It’s an important observation to make that feeling like an outsider, is in fact, a feeling. There is genuine truth behind this, and in truth, it can be a label you accept and let define you. Like Alice, I’ve always felt opposed to my peers for many reasons (color of my skin, my name, my country of origin). It is an easy place to stay. However, you have the power to change your reaction (to your fears) and to choose yourself and your destined path.
Don’t fear breaking the norm, fear the regret of not making your own choices.
Much like Bryan, who addressed consent in deception studies in the “Uninformed Consent?” blog post, I also struggled with the complicated issue of whether informed consent within deception studies is possible. I found a parallel between the initial state of ignorance (“uninformedness”) in deception studies to that of the Maslin family when they first received the Clay’s Ark organism. As explained to us by Dr. Chapman in our Skype call with him, participants in Chapman’s deception study did not know that they had been exposed to a non-pathogenic strain of E.coli. When Meda initiated contact with Blake (by grabbing his wrist), he had no idea what she had exposed him to. So then what happens in cases like deception studies, where results can only be trusted with a level of deception (which requires a state of not knowing), and in cases like the Clay’s Ark scenario, where the organism makes consent more or less impossible? What do we do when we have a violation of informed consent?Continue reading “The Aftermath”
There are two different ways you can read Zulus. One of which being, you can read each chapter heading/title. The other is choosing to completely skip over them. When I first started to read Zulus I ignored them and I only paid attention to them when it told me where to stop reading for class. It wasn’t until after a few class discussions that I went back and read them, and began to read them along with my chapters. After that, I started to piece everything together. I started to make connections, and I started to read the book a little more closely. When you look up the people, places, and dates in the chapter headings a lot of things start to make sense, but it also raises many more questions. I mean Chapter B tells you how the book is going to end! “Z is for Zulus” (21). The book title Zulus doesn’t really make much sense until you get to Chapter B where it gives a very brief history of the Zulus people and how they “fought for three hours, leaving three thousand Zulus dead” (21). It made me wonder if Everett chose them on purpose because their story was a brutal one, just like the history of the society in the book. When you get to Chapter I, the end of the heading says “I is for Imhotep”. I didn’t know who Imhotep was until Professor McCoy told us in class that he is often considered the father of medicine. I fact-checked this with an article I found, “Imhotep and Medical Science – Africas Gift to the World” by Don Jaide which said, “Imhotep was the world’s first-named physician”. NOW, put that into context with our book; the society in which Alice lived in had no medicine, so why is Imhotep relevant? What does he have to do with anything in the book other than being the father of the medicine that they DON’T have? The only thing I could think of was the irony behind this. The society has no access to medicine. After discussing in class one day, a few people brought up the idea that the reason they might not have access to it is so everyone winds up dying and the planet has the chance to heal from the disaster that struck. It brings up the idea of our course epigraph again and how as readers, it’s our job to notice when the author embeds hidden clues and meanings behind things in their writing. It’s also our professors’ job, and also our own job to make sure we are noticing those things to better ourselves and our observing skills. Often times we overlook things that are right in front of our faces and don’t think about it because it either seems too obvious or because it is too sensitive and we don’t want to talk about. As readers, and as members of society we have to start being more observant of the things going on around us. We have to be more willing to talk about sensitive topics, the ones we don’t want to talk about if we are ever going to change as a society.
Washington wrote in Medical Apartheid about how 42 years ago a man named Casper Yeagin vanished. His family had reported him missing, and after a few months of him missing and his family calling and visiting the cops many times, they finally found his body. Yeagins body had been awarded to a medical school to conduct research. They were able to find his body before they dissected him (115-116). Many people are unaware of situations like this that happened in our history. I didn’t know that was a thing until I started this class. It’s crazy to think that this happened only 55 years ago (the book was published in 2006, 13 years ago. 13+42=55). 55 years ago my grandma was my age, it’s crazy to think that this was happening during her lifetime. It’s sickening how many people turn a blind eye to things like this. We need to be better-informed citizens about our history, so we can make sure things like that never happen again.
My takeaway from Zulus is to be more observant and to ask more questions in my day to day life. Not only will that make me a more informed citizen, but it will help me to educate other people. My future plan is to become a middle-high school English teacher and I believe that by being informed on all past and present topics I can better teach my classes and better shape the youth of America.
Making mistakes is a part of being human, but what happens when one is never given the opportunity to try (and occasionally fail) at life’s challenges? Shielding people may temporarily spare them from discomfort, but when does this act result in more harm than good? In Toni Morrison’s novel, Home, we see the aftermath of what happens when the constant protection of Cee, by her brother Frank, abruptly ends. A similar dilemma is not unfamiliar to countless medical students each year as they transition from the academic environment of medical school to the realities of residency. In both cases, I will discuss what happens when “protectors” are removed, how to learn from mistakes that have been made, and how to prevent them. Although in this post I liken Cee’s transition to independence to that of medical students, it is important to note that even though both parties share commonalities in their intelligence, motivation, and transition to more independent people, Cee and modern medical students also have very stark differences between their circumstances. In the novel Home, Cee is oppressed because of both her socioeconomic status and her skin color; she is in a vulnerable position not because of her personal qualities, but because of the systematic oppression of her society. There is no doubt that some people who practice medicine also endure these challenges today, but it needs to be noted that those who attend medical school have already achieved a level of social status and education that Cee did not have access to. To simply compare the two parties without acknowledging this difference would be unjust.Continue reading “Mistakes & Medicine: How to Prevent and Address Medical Errors”
The definition of consent from the Merriam-Webster dictionary is “to give assent or approval”. Giving consent happens in most of our lives very often. Every time we go to the doctors office we sign to give consent to the doctors. Informed consent happens when a physician gets the patient’s authorization to undergo a specific medical intervention. Doctors are supposed to make sure the patient understands the medical information and they are supposed to present all the information including diagnosis and all risks that go along with it. A patient can only make a choice if they have enough information about the treatment, benefits, and side effects. You have the right to decide what happens to your body, because it’s YOUR body.
In my life involving doctors consent I remember back to when I had brain surgery. My neurologist gave me two options to fix the problems in my brain that I was having. There were two different surgeries that I could choose between. He gave my parents and I detailed information for both surgeries. He presented us with all the risks for both surgeries and gave us details on how each procedure would work. Once we decided on a surgery we signed lots of different consent forms. This helped me feel more comfortable going into the procedure because I knew exactly what was going to happen while I was under. This is exactly what a doctor is supposed to do. I could not imagine going to the doctors for a surgery and putting all my trust in a person for them to do some horrible thing to me without me knowing. Or even doing tests on me without me knowing.
The book we have been reading “Medical Apartheid” has many examples of not giving consent. In chapter 9, “Nuclear Winter”, talked about a man by the name of Elmer Allen. Allen had fallen from a train and fractured his leg. Later on he was diagnosed at a free clinic with chondrosarcoma which is cancer of the bone. The doctors then injected his leg with plutonium 238. The medical records said that he was told something about the procedure but he was not actually given enough information to consent to it. The doctors lied and said that this injection was a form of therapy and would be their last hope to save his leg, however, they ended up amputing his leg. In reality, he was part of an experiment. This experiment left him disabled, and greatly affected him for the rest of the years he was alive.
In my mind I really cannot grasp how any doctor could do this to someone. Not only one person but they experimented on 20 people in this same way. There are so many stories just like this one. This is exactly why there is a medical consent requirement. I could not imagine going into a surgery and ending up in some sort of awful experiment instead of being helped. People were tested on like some sort of guinea pigs. They were not aware of what was going on and they were not given any options. Doctors took their body and did whatever they pleased to it. Their bodies were no longer their own. This concept is absolutely horrifying to me.
Another thing I have been thinking about involving consent is not directly involved in the medical field. Listening to Ben
Chapman speak about deception studies is what really started to make me think about consent. Did they give enough information for the people to give consent for the experiment? They were not aware before they started that there was this specific form of ecoli placed in the experiment. Sure, it was no risk to the people in the study but should it have been discussed with them before they gave consent? This really pulls me in different directions trying to decide what is right and what was not. I don’t think they could get accurate information from the experiment if they knew about it before hand because people will act differently if they know. However, I completely understand why people would want to know about it. Listening to Chapman talk about changing how they inform the people at the end comforted me. It showed how much he cared. Ben Chapman is not like one of those doctors who treats the subjects like lab rats. He understands and wants to make sure each person felt comfortable after finding out everything in the experiment.
Consent is clearly an important part of our lives. It is your body and you get to decide what happens to it. I would always want to know all the facts and understand anything that could happen to my body. No one else can decide what happens to my body except me. Listening to Chapman and reading ‘Medical Apartheid’ has really made me realize how important it is to give consent. Not only to give consent but when I’m giving consent how important it is to know exactly what it is that I’m giving consent for.
After having the privilege of hearing about the process of human scientific studies and the nuances of informed consent with Dr. Ben Chapman of North Carolina State, I was left with a troubling thought about what it means to be informed. Chapman, in his podcast Food Safety Talk Podcast Episode 163: “Grown on Chia Pets”, discussed a particular participant that challenged the consent process of one of his studies. The chief complaint of the participant was that he felt betrayed that he was not properly informed before taking part in the study. To avoid biased results, researchers often use deception studies. Deception studies, by nature, cannot fully inform participants on the true aim of the study. The question I was left with was: Should we allow deception studies to continue being used?
In Percival Everett’s Zulus, Alice is offered safety by being smuggled out of the city to a rebel camp by Theodore Theodore. Alice consents. However, her consent is meaningless. When she consents the only information she was given is that Theodore Theodore says “I will do everything I can to help you”. Later, Alice finds out that she will be subjected to imprisonment and a violating verification of her pregnancy. Although Alice provided consent by asking for help, she in no way consented to the horrible acts she would have to endure. Alice was extremely uninformed and forced to suffer because of the deceit of the rebels. To properly consent, Alice needed far more information than what she was provided. Alice was not informed of everything that she would later encounter and therefore is a violation of informed consent.
Harriet A. Washington describes another situation of uninformed consent in her book Medical Apartheid. She recounts a story from Jesse Williams about participating in a footwear experiment that was really an attempt to induce a foot fungus that was extremely difficult to treat. “Investigators went to remarkable lengths to deceive inmates about the harms inherent in the tests”. This is clearly a violation of attaining properly informed consent. While Williams was prison he was never given a consent form. Even if he had the ability to consent to a study of this nature, he was grossly under-informed about the true nature of the study. Williams experienced a lack of informed consent because he has deliberately misinformed about the aims of the study. He was also not aware of the risks that accompanied the true nature of the experiment. Williams’s lack of knowledge of risks and the true goal of the experiment would have prevented his ability to provide informed consent if he was given the opportunity.
Alice and Williams’s situations demonstrate a clearly unacceptable lack of information. However, deception studies also withhold information from participants. Deception studies are considered necessary and ethical in today’s human research environment. According to the University of Wisconsin’s Health Sciences Institutional Review Board, deception studies are necessary in order to “obtain unbiased data with respect to the subjects’ attitudes and behavior when complete or truthful disclosure is expected to produce biased results”. Human beings often aim to please, so if they know the aim of the study they tend to alter their behavior. The IRB of the University of Wisconsin indicates that researchers are allowed to active deceive and passively deceive research participants. Active deception involves providing inaccurate information to participants. Passive deception is intentionally withholding information that is vital to the study. Alice experienced passive deception because she did not fully understand what would actually occur at the rebel camp. Williams experienced active deception because the information provided was inaccurate to the actual details of the study. Alice and Williams both experienced deception in ways that current researchers utilize.
If the deception that was described in Medical Apartheid and Zulus was considered unjust, should researchers today be allowed to use the same methods? Yes, because there are oversight organizations that prevent deliberately detrimental practices. Chapman deliberately deceived his study’s participants by not disclosing that they would come into contact with non-pathogenic E.coli bacteria. I believe that Chapman was just in doing so because the Institutional Review Board protects participants. The IRB ensures that studies can only involve minimal risks to participants and risks described to the participants cannot inaccurately represent actual risks. In William’s case, the risks were not described accurately and thus an oversight board would have prohibited this study. Institutional review boards also have provisions that force researchers to reveal the actual details of the study to participants and allow them to withdraw from the study and completely eliminate any data acquired. These provisions protect subjects from initially consenting and then not being able to revoke their consent. Subjects may not be fully informed at the beginning of the experiment but are completely informed before their information is used.
In an ideal world, deception studies would not be necessary. True informed consent is currently not a reality in human studies. Deception is required in order to gain accurate knowledge to provide a benefit to the population as a whole. As long as research participants are not being taken advantage of and only experience minimal risk, deception studies should be allowed to continue. In the case of Chapman, deceiving his participant was a source of great regret and felt that he personally had a responsibility to revise his study to avoid problems in the future even though his study held up to IRB guidelines. Researchers, like Chapman, act in good faith and are subject to many rules that ensure the full protection of participants. While willingly deceiving research subjects may seem in bad taste, it remains a necessity.
Throughout literature and history in general, we learn as students that when something bad occurs one of the human reactions is fight or flight, so often we see one of these reactions when presented with stories of runaways. Cee, a character from Home by Toni Morrison, was medically abused by her employer and her brother helped her escape. When she escaped: “Sarah and the doctor stood locked in an