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“Hurt people don’t need more isolation.”

• Michael O’Bryan, “Healing from Trauma in the 21st Century”, 4th Annual Social Justice and Cultural Competence, Rowan University (October 2016)

 

This weekend, I attended Rowan University’s 4th Annual Social Justice and Cultural Competence organized by their Office of Social Justice, Inclusion, and Conflict Resolution. The conference theme was “Communicating Across Differences: Dialogues to Heal Our Communities.” Their keynote presentation resonated with me, so I decided that I would write about it in relation to our class. I was not able to get a hold of a transcript or video for the keynote presentation, so I attached three photos to this post to provide context.

Michael O’Bryan talked about trauma-based care for disadvantaged populations in the 21st Century. He began his presentation with the concept of “militant utopism,” or an imagined world that is both peaceful and strict with issues of equity. O’Bryan presented that most activists will have images of militant utopism in our hearts and aim to move closer to such a reality. O’Bryan also presented that to do so we must consider health beyond the physical to include psychosocial health. We must shift our health practices to ask “what happened to you” instead of “what is wrong with you.”

The following are tips offered to make more inclusive health practices that take into account patients’ history with trauma:

(1) be intentional in the all aspects of your practice, from how you interact with folks on the everyday level to the broader institutional aspects

(2) be compassionate and lower the stakes of risk for all individuals– “keep standards high but expectations low.”

O’Bryan’s presentation relates to our discussion of inherited or generational trauma within groups of people. Throughout the presentation our discussions during the first unit “Historical Antecedents” were in the back of mind, especially in relation to how African American populations feel the effects of slavery and medical disparities presently. His presentation also made me rethink how to engage with social justice to be more compassionate and inclusive. This is something that came up during the conference introduction, my workshop, and the keynote presentation. What baggage do we carry in calling people out on problematic practices? How do we engage with inequitable structures without reproducing a another inequitable structure?

 

First Photo: Description of the conference

Second Photo: Keynote speaker’s bio

Third Photo: Description of keynote’s talk

How U.S. Torture Left a Legacy of Damaged Minds – The New York Times

When I first came across this article I thought it would be a great example of a living laboratory, but after reviewing the information that we had gone over in class (such as Medical Apartheid and Working Cures), I had difficulty in drawing comparisons that would equate our class’s understanding and the article’s view of Living Laboratories. What initially caught my eye about this article was its comment on the long term effects of torture and how tortured prisoners’ pasts have affected their present interactions and health. This reminded me of the rooted distrust that African-Americans had towards western doctors due to the scientific racism and non-consensual experiments African-Americans have been subjected to in the past. Where the difference appears to lie however is between the environments from which the two originate. While the African-American distrust of doctors stems from the non-consensual experiments their people have been subjected to by western medical professionals, the tortured prisoner’s psychological effects stem the non-consensual procedures that prisoners have been subjected to by American torturers.

Together as a class, we came up with lists of what an unsound living laboratory looks like compared to what a living laboratory should look like. I compared the list of values that we came up with to the values that were not involved within the US’s torture procedures. In doing so I found various similarities that convinced me that torture victims face a similar form of victimization that those subjected to unregulated livings laboratories do. At the same time, I still find myself plagued with various questions about said similarities that remain unanswered:

Firstly the idea of “non-consent”: Prisoners do not appear to have consent. The article articulates that consent from prisoners within the parameters of the subject’s torture is minuscule to almost nonexistent. The question that this concept begs is what rights are guaranteed to prisoners of war and how do these rights come into play when subjecting said prisoners to torture? Secondly, the idea of the “unequal power dynamic”: Being that prisoners are prisoners and that they have no power in the environments in which they are held, any experiments or procedures that they are subjected to are completely out of the realms of their control. This feeds into the idea of consent as well. With little to no power, prisoners would appear face the same unbalance of power as would victims of an unregulated living laboratory. And thirdly, the idea of having a “regulated/ controlled environment”: What does a regulated/ controlled environment look like when it comes to torture? Do regulations come into play when torturing a person? How are said regulations decided and executed? What guarantees are there to make sure that the torturer is meeting said regulations?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3272525/

http://www.texasmonthly.com/articles/briar-patch-6/

These articles discuss a study that was conducted in 1970 on unknowing, poor Mexican American women that related human experimentation with reproductive rights.  The study was conducted in San Antonio and consisted of 86 women.  They were told that they were going to be receiving birth control pills and these women, many that came from Planned Parenthood, agreed.  What was unknown to them at the time was the fact that half way through the experiment, half of the women were going to be given a placebo pill with no hormones at all.  This change was without them knowing and without any of them consenting to this change.  This led to 10 of the women in this study ending up with unexpected children.

This study is reminiscent of many of the themes that are evident in the other sources we have discussed.  First, the fact that this experiment was done on poor Mexican American women.  This exploitation of the lower class and immigrants is clearly the doctors way of getting away with experimenting with such a thing like birth control.  This would never have been acceptable if it was performed on someone from the upper class.  By exploiting the fact that they were poor and needed to go somewhere like planned parenthood to receive their birth control, the doctor was able to satisfy his curiosity of what was going to happen when birth control was stopped. Second, this is evident on how many doctors did not view these women as their equals.  They saw as something to perform experiments on, nothing more.  It was even more shocking because it was clear what the outcome of this study was going to be, and it was still done with no thought on what effects it was going to have on the individuals who were wrongfully tricked into participating.

Many of the other sources discussed in the seminar have had horrific things done in the name of science and medicine.  Most of them benefited some person, mostly the people who did not have to undergo the procedure.  However, this experiment did not bring about any new information to science or medicine.  Rather, a doctor wanted to see what would happened in, in turn, led these unsuspecting and non consenting women to a future they could not have expected.

http://www.cdc.gov/tuskegee/timeline.htm

http://www.tuskegee.edu/about_us/centers_of_excellence/bioethics_center/about_the_usphs_syphilis_study.aspx

Beginning in 1932 and continuing for another 40 years, the Tuskegee Syphilis Experiment was designed to see the effects of syphilis on black subjects.  For this study, 600 poor, illiterate men from Alabama were enrolled with incentives like free medical examinations, free food on days they were in the hospital and even burial insurance.  These men, however, were never told what the true purpose of the study was.  In fact, this study was to see how the disease played out, from infection till death of the patient.  When penicillin was discovered as a cure for syphilis this information and life saving medication was withheld from them, causing most of the participants to die from their curable illness.  It wasn’t until 1972 that the horrors of the experiments were released to the public and the surviving victims and their families were awarded 10 million dollars and free medical and burial services for survivors, widows and offspring.  This is a clear violation of many fundamental human rights, and a clear example of unethical human experimentation.  The public outcry was one of horror, and became another reason why African Americans feared medical professionals, because there was always the fear that they were not receiving the cures for illnesses they had, rather were part of a secret medical experiment that they were not informed about or consented to.

This situation led to a movie, entitled Ms. Evers’ Boys, that follows a black nurse that helps the white doctors facilitate this experiment and then is called in during the lawsuit to testify, which is shown in the clip above.  This clip shows what happens when medical professionals think that what they are doing is for the greater good.  The nurse thinks that this is experiment was to help both blacks and whites, even saying that the doctors were able to reach a conclusion from these experiments, that blacks and whites had no difference in the course of disease.  The nurse, although she is also black, shapes the experiment as though this is going to be a great help to the black community.

However, it is clear from the records and layout of this experiment that this was not actually the case.  The experiment went on 40 years and many people died, even after a cure for the disease was found.  If this experiment had been for the betterment of the whole community, the cure would have been used to see how the individuals would react.  Instead, the scientists watched the subjects suffer and die because of their own curiosity.  As said in the clip, this type of experimentation would never have happened to whites, as they were being considered the medical norm, rather than the medical anomaly.  The clip ends with the nurse saying that she and the doctors should not be blamed for their actions because it was for the betterment of medicine.  However, like many of the other examples of medical experimentation on subjects, the betterment was only for the white community, who got the benefit and the results of the experiments without having to go through the life ending syphilis experiments that all these African Americans had to go through.

Content warning for articles: There is derogatory language used against transgender/gender-nonconforming individuals and folks with mental disabilities. There are also descriptions of medical violence.

I came across the following articles while searching for information about gender transition on Google. I decided to combine two brief articles into one blog post showing two different takes on “genocide” against transgender individuals. The first article is titled “A New Departure from Eugenics” is written by lynneauraniastuart on Transpire. Transpire is a blog “examining the details of the trans experience.” The second article is titled “Eugenics and the practice of transgendering children” by Shelia Jeffreys on The Conversation. The Conversation is a blog that seeks to offer “independent, high quality, authenticated, explanatory journalism (that) underpins a functioning democracy.”

“A New Departure from Eugenics” discusses how most countries once required sterilization as a requirement for transgender folks that wanted to transition or receive medical care. Although the United States wrote the sterilization requirement out, France and several parts of Europe still have sterilization requirements for transgender individuals. The article argues that this is a form of present-day eugenics that is not discussed often enough. The author also states that eugenics is often thought of only in terms of race and psychological ability, even though transgender individuals have historically been victims of eugenics.

“Eugenics and the practice of transgendering children” questions whether hormone therapies are “the answer” for transgender children. The author argues that eugenics is returning to Australia through medical processes transgender children often experience at the consent of their parents. Although the author has an interesting point in questioning transition and biological/cultural alignment as a point of reference for transness, I question why they do not mention the violent “gender-reassignment” surgeries performed on children with “ambiguous genitalia” at birth. I am also wary of the author treating transness as a problem without a solution.

There were several points that I thought were inconsistent in the articles I read. Both articles relate in their binaristic view of gender, or in thinking that individuals are either man or woman. They also both assume that physical transition and gender dysphoria are inherent parts of transness. It would have been interesting to see both bloggers complicate their arguments by including nonbinary individuals and a greater range of (non)transition, in addition to considering experiences outside the “stuck in the wrong body” narrative.

However, these articles do align well with several of our questions around consent within living laboratories. One of the reasons I wrote about both articles is that each presents a genocide against transgender people but in very different ways. “A New Departure . . .” deals with transgender adults within the legal-medical system with the lens of human right, while “Eugenics and the practice of transgendering children” talks about transgender children within a more fluid moral-political-medical (?) system. I found the latter much harder to pin down and process.

I wrote several questions about genocide that might seem similar to questions we have already asked ourselves:

How is genocide defined today along gender lines?

Is it based on the limits of personal bodily autonomy?

If so, can children make that choice?

How does age change consent in medical processes?

Do the terms “genocide” and “gendercide” resonate differently for you? When should we use each term?

 

Links:

https://lynneauraniastuart.wordpress.com/2016/10/21/a-new-departure-from-eugenics/

http://theconversation.com/eugenics-and-the-practice-of-transgendering-children-3838

 

https://www.washingtonpost.com/news/education/wp/2016/10/19/to-be-white-is-to-be-racist-period-a-high-school-teacher-told-his-class/

I stumbled upon this article, which appears to be causing a huge public outcry, while I was scrolling down my news feed page on Facebook. Naturally, being a person who identifies as white and who hails from Bulgaria, a country where the population is almost 100% white has no experience with racism whatsoever, I opened it just to regret doing so.

What struck me is the perpetual generalization that seems to be an inseparable part of racial disputes, a trend we see in all our readings for class. While it is true that genocide and the categorization of humankind is predominantly linked to the white race and this is a shame that should be exposed and continually reminded of, I do not believe in the notion that having fair skin makes me racist and that, more or less, white people today are monsters. I would therefore say that trying to extrapolate historical themes into the matters of a century in which people are transgressing racial and ethnic boundaries in order to help and be helped is a legacy of racism and a sure way to downgrade once again to it and all of its linked misconceptions.  Maybe what might have been meant was that being white means being considered racist, but not necessarily meaning that a white person is racist at heart.

I guess that the concept of implicit bias that the article mentions could be read the other way round with respect to that statement. Namely, we do not inherently think of diversity in a racist frame, but ourselves trigger conflict in our efforts to appease it without paying attention to the versatility our audience has. We are living in an era where we paradoxically create laboratories of our own – schools and law enforcement – by mispresenting or not giving the whole piece of information we intend to and by excluding diversity by leaving room for conflict through subtle opinions presented as legitimacy. This way “impressionable youths’’ are agitated and the gap between races and ethnicities starts to expand at a mind-blowing rate, so that mankind gets stuck in quicksand – we erase our own social accomplishments by trying to secure and promote them through a well-learned but not updated mindset, which I believe is the living laboratory of today: a school system which invests its resources into a bright future but in this deed does not account for the consent of students unconsciously being influenced by authoritative opinions for life, nor for the impact it has on its defendants and the way they and others think of them.

http://gss.princeton.edu/event/gss-workshop-catherine-clune-taylor

 

Childhood experiences of racial animosity, discrimination, and prejudice can have lasting impacts on the life of pupils, research suggests. Studies show that it can actually lead to depression, poor academic performance, and negative health outcomes. The notable section discusses why equality and justice is essential to the developmental science discipline and that it has the power to influence policy  and practice,  aimed at tackling inequality directly while simultaneously  mitigating the adverse experiences of traditionally discriminated against people.

This ties into our class lessons on institutional instruments that are put in place that effect  minority communities and their ability to succeed. This prejudice that minority students may face, feeds into the low expectations set for minority students and limits their ability to succeed. Mental health is something else that has in the past- been used to stigmatize and to detain minority populations- as we can see in Toni Morrison’s Home. However now mental disease is being used as a crippling, silent killer that is seemingly dismissed by the same system that used mental health as an excuse to unjustly detain.  We first saw mental health as an excuse to detain, and now we see it ignored and permitted and used to hold back minority populations.

http://www.news-medical.net/news/20161019/New-research-provides-insights-into-impact-of-childhood-discrimination-experiences.aspx

http://usuncut.com/class-war/politico-flint/

The following cartoon was drawn by politico cartoonist Matt Wuerker following the Flint Michigan Water crisis this past year. The picture features two water fountains with one labeled “white” and the other labeled “colored” referencing to the segregation that plagued America until the formation of the Civil Rights Act in 1964. The water coming from the “white” water fountain is clean and clear whereas the water coming from the “colored” water fountain is murky and filthy; thereby suggesting the differences in water are designated solely to the races that drink from them.
One of the major themes in class that we discussed was the perpetuated interchangeability between race and disease. In John Duffy’s The Sanitarians: A History of American Public Health, the author examines this idea through observation of the interactions between the medical world and people of color throughout history. He goes into detail on the experiences of immigrants who were forced to be “sterilized” with harsh and demeaning treatments upon entrance to America and how such actions perpetuated this association between people of color and disease.
The Flint Michigan Water Crisis that Matt Wuerker’s cartoon illustrates reminded me of how this idea of interchangeability between race and disease could still be perpetuated today. The Flint Water Crisis poisoned over 100,000 residents in the Flint Michigan community with 57% of these residents being black. Therefore the majority of patients coming in with illnesses as a result of the infected waters were patients of color. With the sudden influx of sick people of color, one might easily have assumed that the illnesses were associated with the race rather than with the community that the people lived in. This might explain why it took Flint Michigan the amount of time that it did to address the water poisoning and even acknowledge the infected water as an issue in the first place.

http://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells-6421299/?no-ist

https://www.theguardian.com/science/2010/jun/23/henrietta-lacks-cells-medical-advances

Henrietta Lacks, a poor black tobacco farmer, had an extremely influential role  in the field of medicine, from the polio vaccine to cancer research.  Her contribution, however, is embroiled in controversy because she was used but had given no consent.  What makes this story a little tricky however, was the fact that she had contributed her cells, later to found to be immortal, and then died.  The ethical questions about this story continue to this day especially when looking at ownership of your own cells before and after your death.

Henrietta Lacks met her untimely demise by a severe cases of cervical cancer.  When she was close to death the doctors overseeing her case took some of her cervical cancer cells, without her permission or her family’s permission or knowledge, to run typical tests.  However, during these tests and to all the doctors’ surprise, these cells were immortal, meaning that these cells could continuously split and reproduce, unlike normal cells that will eventually die off.  This discovery led to a billion-dollar medical industry and many medical advances.   This success story came to a jarring halt when  a journalist, Rebecca Skloot, made an effort to track down Lacks’s surviving family.  In her book, The Immortal Life of Henrietta Lacks, the journalist revealed that not only did the family never see any of the profits of an industry based on their mother’s cells, but also that these individuals had been without adequate healthcare and living in poverty.

Though not performed on a living human, these cells represent a laboratory that is riddled with controversy.  These controversies, ranging from the lack of information and compensation that the family received to the fact that permission was never received, lead to a couple different ethical questions.  And many of these questions boil down a person’s ownership of their individual cells.  The doctors and scientists that worked on this case explained away their use of Lack’s cells by saying that they were part of a tumor that was going to be removed anyway.  That Lacks did not have any say, and by extension did not need to give consent, after the cells had been removed from her body.  This is in an effort to show that the importance of the cells and the advancements that were developed from these cells were completely justified to do what they did.

However, some of these arguments do not take into account that consent was never received for the use of these cells.  Even though they were being removed, consent should have been given for test not related to her cervical cancer analysis, even if they were going to be thrown out after these tests.  These cells still belonged to Lacks, and after her death, her family.  I found this reminiscent to when dead bodies were used for cadaver lab without consent in the previous unit. This lack of respect for the dead is an interesting theme, and I wonder if this behavior would have been acceptable if she had come from a better background.

Their other argument, saying that the discoveries were worth it, dehumanizes Henrietta Lacks, and tries to make lack of consent acceptable.  These articles also reminded me of the reoccurring theme that blacks were afraid of going to hospitals and being seen by white doctors.

In other cases, the human body was being violated and mistreated.  This case dictates a scenario where your cells were used without your consent and without your knowledge.  The ethical issues surrounding this demonstrate the strain that occurred between white doctors, and by extension white scientists, and their black patients, that were often seen as subjects in a study rather than patients.