Hashtag Activism: #crimingwhilewhite vs. #alivewhileblack

Via this article from the Guardian, where Jessica Valenti describes how the “latest viral hashtag started on Wednesday night after the Garner decision came down and, using it, white people have detailed crimes they’ve committed without much trouble (let alone violence) from authorities. The hashtag is meant to be a glimpse into the incredible world of white privilege, where you can shoplift and get away with itdine and dash with impunitytell a cop to fuck off or even have one drive you to the ATM for bail money on the way to jail.”

Valenti says that the hashtag, while meant to help, actually perpetuates rather than undercuts white privilege. According to Valenti:

“While these stories do highlight just how biased law enforcement in the US really can be, #CrimingWhileWhite has the unfortunate side effect of redirecting focus from the continued police violence against communities and people of color back to white people and their experiences. (Nate Silver’s post-Ferguson “burrito” story, which was widely condemned as tone-deaf, is unfortunately typical of the genre.)

White people acknowledging white privilege is important, but in the midst of national tragedies, tweeting about how you got away with criminal acts feel like a performance of awareness that you are privileged rather than what we really need – a dismantling of the power obtained through that privilege.”

I disagree — the hashtag #crimingwhilewhite forces white people to unpack what Peggy McIntosh calls the “invisible knapsack” of white privilege.  In a her classic 1988 essay, McIntosh described how she unpacked her invisible knapsack by identifying “conditions of daily experience that I once took for granted” which included things like “If a traffic cop pulls me over or if the IRS audits my tax return, I can be sure I haven’t been singled out because of my race.” According to McIntosh,  “obliviousness about white advantage, like obliviousness about male advantage, is kept strongly inculturated in the United States so as to maintain the myth of meritocracy, the myth that democratic choice is equally available to all. Keeping most people unaware that freedom of confident action is there for just a small number of people props up those in power and serves to keep power in the hands of the same groups that have most of it already.”  In order to “redesign social systems,” says McIntosh, “we need first to acknowledge their colossal unseen dimensions.”

Contributing stories to the #crimingwhilewhite hashtag, and reading all these side by side with the #alivewhileblack stories (which you can do easily with this Storify by Haley Whisennand) is a collective unpacking of the backpack for white people in America and elsewhere.  It’s a small step but we need to start somewhere.

Trumbull Library presentation on Henrietta Lacks and the Immortal Life of Health Care Inequalities

Earlier this week, I helped lead a discussion of Rebecca Skloot’s book The Immortal Life of Henrietta Lacks as part of the Trumbull public library‘s One Book One Town series.  My co-leader was Laura Stark from the Science and Society/Department of Sociology at Wesleyan University.  Laura was a fact-checker for the book while she was a fellow at the Office of National Institutes of Health History.  Laura focused on points raised in her forthcoming book, Behind Closed Doors: IRBs and the Making of Ethical Research, which will be published in November with The University of Chicago Press.  She looked at how the treatment of human subjects in the United States has evolved since the Second World War and this impacts Institutional Review Boards today.  My emphasis was on standards of care for cervical cancer patients then and now, and how this intersected with prevailing issues of race, gender, and class.   As Skloot observes, Henrietta’s care was typical of teaching hospitals at this time, and Johns Hopkins was one of the few in the region that admitted African American patients (albeit in segregated wards).  During the 1940s and early 1950s, there was no Medicaid and third party private insurance was only beginning to become an employee  benefit.  So, as a “charity patient” Henrietta received state of the art cancer treatment that many at that time could not afford.  The care would have been the same had she been white.  Yet, the prevailing attitude at the time was that since “charity cases” were treated for free, doctors were entitled to use them in research, whether the patients realized it or not. Henrietta’s doctor once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.”

Also, epidemiological studies of cervical cancer tended to reinforce cultural prejudices about race and socioeconomic status of the time period. By the early 1950s, researchers noticed that cervical cancer was common in prostitutes and others with multiple sexual partners; rare in Jewish and Muslim women; and practically non-existent in nuns and virgins.  There was considerable debate about whether this was due to an infectious agent or genetics. The notion that different races had propensity to certain diseases was common  — e.g. blacks were characterized as a “notoriously syphilis-soaked race” while Jewish persons were believed to be more prone to respiratory illnesses like TB. So, “race medicine” included the theory that Jewish and Muslim women were more likely to develop cervical cancer because of their “race.”  We now know that male circumcision helps prevent the transmission of sexually transmitted infections, such as the human papilloma viruses that cause many genital cancers. Starting in the 1950s, scientists explored the link between adolescent sexual activity and the development of cervical cancer later in life. Several epidemiological studies published in the 1950s and early 1960s indicated that women who married before age 20 appeared to be at higher risk for cervical cancer. Some speculated that women who had multiple “broken marriages” were especially susceptible. Some cancer researchers hypothesized that some kind of infectious agent transmitted by male partners was a contributing factor, and that the adolescent cervix was especially vulnerable to “epithelial transformation” by exposure to such an agent. Given that a disproportionate number of patients were nonwhite, non-Jewish women of low socioeconomic status, recommended that routine pap smears were especially important for “nonvirgins” from underprivileged groups. These findings also tended to reinforce prevailing stereotypes about the links between disease risk, race, and class – those living in poverty – especially if they were nonwhite – more likely to be “promiscuous.”

At the same time, the introduction of Pap smear led to the notion that “cancer was curable” if caught early — this provided the justification for annual gynecological examinations.  Prior to Medicaid,  a young woman of Henrietta’s social class would not have had access to routine preventive medical care. Thus, the health disparities indicated by cervical cancer studies were used to justify government funded preventive screening for those living in poverty.

Another recent development has been efforts by health activists to make medical research more inclusive.  As Eileen Nechas and Denise Foley show in their book Unequal Treatment reformers fought to make sure that all studies funded by NIH included women, racial minorities, children and adolescents, where appropriate, historically “decisions on what aspect of health to study, on what research protocol to fund” were based “not only on scientific merit . . . but on a judgment of social worth. What is valuable to medicine is who is valuable to society, and that is white men.”  Since the late 1980, health activists fought to make sure that all studies funded by NIH included women, racial minorities, children and adolescents, where appropriate; and made sure that diseases that disproportionately affected these groups got “equal time” and money.

Here are the discussion questions we gave to the audience:

Should people have a right to control what’s done with their tissues once they’re removed from their bodies? And who, if anyone, should profit from those tissues?

Deborah says, “But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense” (page 9).   Should Lacks family be compensated by those who profited from research on HeLa cells?

How does this story relate to recent history of health care reform, and attempts to expand access to medical advances made possible by research on HeLa and other human tissues?

How can medical professionals recognize that certain diseases affect certain racial/ethnic groups without replicating prejudices of old “race medicine”?

The Guatemala STD study and the problematic history of human subject research

My friend and colleague Susan Reverby has been all over the news the past few days  because of her discovery of unethical studies of STD transmission conducted in Guatemala during the 1940s (great interview on PBS News Hour, Susan!).  She found the material on the Guatemala studies while researching her new book on the history of the infamous Tuskegee study of untreated syphilis in the Negro male.  Susan’s work on Tuskegee shows that abuse of vulnerable populations is not limited to Latin America and other areas of the developing world: it was happening within our borders long after the trials of Nazi scientists following the Second World War.

I made a modest contribution to the history of human subjects research in a talk at Wesleyan University this afternoon.  (this is a continuation of my earlier article on using students for medical and behavioral science research).  My talk was part of the launch of the Wesleyan Digital Archive of Psychology.  My talk was called “Coeds as Guinea Pigs,” and discussed the use of diethylstilbestrol (DES) as an emergency contraceptive and the controversy that ensued once it was discovered that this drug caused cancer in the daughters of women who had taken the drug during pregnancy.  Y’all are going to have to read my book for the full story, but briefly, news about the DES research was exposed at the same Congressional hearings that discussed the Tuskegee study, and research on Depo Provera using poor women of color as test subjects.   These hearings and similar exposes led to significant reforms in the treatment of human subjects in the United States.

Shirley we’re (not) beyond race and gender

via Historiann

who links to a post on the Shirely Sherrod affair by  Tenured Radical.

Historiann picks up on my comment to TR’s post,

“speaking of Shirley, “surely” we are beyond gender too? Seriously, I can’t help thinking that it was easy to treat this employee as expendable because she’s female.”

[note:  if you don’t get the surely/Shirley thing, go back and watch “Airplane” for an explanation].

Historiann agrees, saying it’s easy “to demonize women, especially women of color (like those who speak just once hypothetically about wise Latinas, f’rinstance), and discredit them as authority figures, whether they’re merely self-published writers or members of the current Presidential administration.  Somehow it’s all too easy to believe that a woman needs to be disciplined or even humiliated for shooting her mouth off again, and it’s all too difficult to believe that she’s deserving of due process, a fair hearing, or even of a complete reading of her professional opinions and accomplishments.  Van Jones was canned last summer without delay, and he was a dude.  But, Tenured Radical reminded us today about how easy it was during Bill Clinton’s presidency for the Administration to throw an African American woman appointee or would-be appointee under the bus (Lani Guinier and Dr. Jocelyn Elders, for example), especially if and when they dare to write or speak frankly about race or sexuality.”

Right on, and thanks for the link love, Historiann!

The Alternative History of the Pill

In an article at  RHRealityCheck.org, Bianca Laureano of LatinoSexuality.com states why she will not be participating in the celebration of the 50th anniversary of the Pill:

“Excuse me if I do not partake in all of the celebration of The 50th Anniversary of The Pill because from my perspective it is still very much a reminder of the exploitation and violation of human rights among Puerto Ricans (and Haitians, and working class women in general) that continues today. Ignoring this reality is easy. Yet, it is a part of my, our history that I can’t simply forget or overlook. If I choose to ignore this history I also choose to ignore the history of activism by members of my community that has helped to create change at an institutional level. Ignoring this reality and history also perpetuates the ideas that historically oppressed communities are not important in the work we do today. . . On anniversaries such as these, I ask that we all take a moment and think about the people who have been directly impacted negatively during trials, especially when historically discussions are not comprehensive and exclude us. Also think about how pharmaceutical companies are still engaging in some questionable actions and continue to purchase land in Puerto Rico, which does bring jobs to the island, yet those jobs are not always permanent.”

Excellent points and a reminder that not all women viewed this technology as “liberating.”  For more on this issue, see the work of Loretta Ross and SisterSong.

The Society for Menstrual Cycle Research has another alternative take on the history of the pill, this one from a white woman who raises significant safety issues.

Book Club/Women’s Health Hero 2010

via Our Bodies, Our Blog.  Based on last year’s list they are looking for nominees who are still living.  So, I will have to think about whom to choose although I have some ideas.

Speaking of health heroines, and a long unsung one at that, meet Henrietta Lacks (image below), subject of a riveting new book by Rebecca Skloot that my book club discussed last night.

As a medical historian, this gripping and horrifying story of a black woman whose cells were used for medical research without her knowledge or consent (or that of her family) was no surprise.  There is a long history of using African-Americans and other marginalized people (orphans, immigrants, persons with disabilities, the poor) for the “advancement” of medical research. Henrietta’s cancer cells, known by medical researchers as the cell line HeLa, were the first “immortal” cell line to be successfully grown in vitro. HeLa cells were later used for a host of medical discoveries, including research on the polio vaccine.  The story of Henrietta and her family, though, reveals the huge disparities in the American health care system past and present. Henrietta was a poor tobacco farmer from Clover, Virginia who received medical care in the “colored” ward of Johns Hopkins Hospital.  The virulent cervical cancer that led to her death was probably caused by a case of HPV given to her by her philandering husband (she had been treated for syphilis and gonorrhea).   It appears that the cancer treatment she received was pretty good for the day given the state of cancer research and therapy at this time.  Still, physicians’ refusal to listen to her complaints about a “knot on her womb” until it was too late reflect the paternalism and sexism of the medical establishment at this time.

The book also tells the story of Henrietta’s family, who only learned about the HeLa cells decades after her death when scientists began asking them for blood and tissue samples, and reporters from Ebony, Jet, and  Rolling Stone began interviewing them about their mother and the cell line derived from her cancer cells. The family’s horror at this revelation is nicely summed up by the statement by Henrietta’s daughter Deborah:

“I don’t know what they did [to my mother], “but it all sound like Jurassic Park to me.”

One of my fellow book clubbers plans to use this in her ethics class.  I plan to use it the next time I teach my graduate seminar on gender, health, and sexuality.  Meanwhile, I’m hoping to invite Skloot to come to CCSU as part of her totally insane book tour (which she organized largely through Facebook and Twitter — I’m stealing that idea!)

Disability oppression: Disabled African University of Florida graduate student shot by university police

via Gainesville.com.  I’m very disturbed by this case, but not for the same reason as University Diaries, who  includes this with other cases of “delusional” students.  Here are the facts of the case that UD reports:

“Police first met with [Kofi] Adu-Brempong [an international student from Ghana] on Monday to check on him after a report of possible emotional problems. Geography professor Peter Waylen had contacted police to say Adu-Brempong had sent an e-mail with troubling statements, which were redacted in the police report. Waylen told police Adu-Brempong had been having delusional thoughts for at least a year and that he previously had received help from a UF counselor because he believed the U.S. government was not going to renew his student visa, the report stated. … Waylen and an officer spoke Monday with Adu-Brempong at his apartment. “I asked Adu-Brempong if he had any concerns that I could help with. Adu-Brempong advised that he was fine and did not need anyone’s help,” Officer Gene Rogers wrote in the report. “I advised him that Waylen and I were concerned for his safety and were there to assist him any way we could.” The report states Adu-Brempong refused help from a counselor and stated several times that he was fine.”

My first reaction was — why is it “delusional” for an international student to fear that he would lose his student visa?  Seems like a pretty reasonable fear to me.

Other facts not included in UD’s excerpt:  the student is 5′ 8″, 150 pounds, and because of a childhood bought with polio, needs a cane to walk.   According to the local papers, the student had called 911 because he didn’t believe that the men outside his door were really police officers (keep in mind that in some foreign countries distrust of police is justified).

In other words, it appears that the U of Florida campus police used deadly force against an African man who, in addition to being in a disturbed mental state, was no physical match for five police officers.

I agree with this op-ed from the Independent Florida Alligator.  This is  a clear case of disability oppression, and a racist one at that.

Update:  The student’s brother, Dr. Kwame Obeng, contends that this is a case of police brutality.  Students at UF held a protest rally on Friday.