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04/22/2011 - 9:54am

The first time the Dr. Oz show called me, I was simply too tired to deal. The story of Caster Semenya -- the track athlete whose sex had been called into question -- had hit the international news the week before, and since then, as an expert on atypical sex, I had done 25 media interviews.

The woman calling me seemed incredulous. “You’re too tired to come and be on Dr. Oz?” She added, “But you were on Oprah!”

Did she mean that, by being on Oprah a few years earlier for a show featuring the novel Middlesex, I had unwittingly made a contract to appear on all the spin-offs? Or did she think my Oprah appearance meant I leapt at any opportunity to be on TV?

Please. You know what Oprah taught me? Unless you count as changing your life having a neighborhood dad say to you every morning at the school bus stop, “You sure don’t look as good as you did on Oprah!”, being on Oprah doesn’t change your life.

I had given Oprah what amounted to at least one full week of research assistance. What did I get? A stretch limo ride from my office to the studio (about a mile), and an Oprah branded tee shirt, mug, and baseball cap. And a week behind on work.

The show did not radically improve the lives of people with atypical sex development, an outcome that would have made it worth recovering from seven layers of eye make-up and enough hairspray to keep a flower arrangement looking fresh for a year.

By the second time the woman from the Dr. Oz show called, I had thought more about what I’d do if they called again. This time she was ringing about a show that would feature a fellow she was calling “Octopus Man.” He was a guy with an underdeveloped conjoined twin attached to him. As a consequence, he had extra arms and legs.

“We have to have you on this show!” the producer gushed. “You’re the best person for this.” I asked her the man’s story. She told me he was Filipino and that he had a wife, a kid, and was basically fine, just as I suggested could happen in my book, One of Us: Conjoined Twins and the Future of Normal.

“If he’s fine,” I asked, “why don’t you leave him alone?”

Awkward silence. Clearly she had not read up to chapter four, where I talk about obnoxious modern displays of people with unusual bodies.

I knew they were probably going to feature this man (who has a name, incidentally: Rudy Santos) whether or not I showed up. If I showed up, I might be able to mitigate the circus atmosphere, turn it more humane. But by showing up, I knew I’d also be legitimizing this.

And that led me to thinking about what we historians of unusual bodies  had been noting, namely that in the old time freak shows in the 19th century, often the people being displayed at least made some good money. They were even sometimes reasonably in control, much more so than when they were treated as hospital-based tragedies. Chang and Eng Bunker (the “Siamese Twins”), Joseph Merrick (the “Elephant Man”), Tom Thumb (the “General”) . . . they’d all made good money.

I thought about my friend Danny Black, who runs a dwarf talent agency. I thought about the grief Danny had taken from Matt Roloff for being shameless about making money off of people’s fascination with dwarfism. Yes, this is the same Roloff who stars in the “family-oriented reality show,” Little People, Big World. I guess Danny isn’t “family-oriented” because he’s willing, for a price, to deliver a singing telegram dressed as Cupid or to strip at bachelorette parties.

Over coffee, Danny had been teaching me how to feel good about asking for more money for my public speaking. Through long conversations, he and I had decided that unless I started asking for money from these TV exploitation gigs they’d never start paying “the star” -- the person with the anomaly. And if they didn’t start paying “the star,” they’d never really approach that person with due respect.

So I had already decided that if this call came I’d ask to get paid.

“Okay,” I said to the Dr. Oz rep. “You’re going to have to fly me in and out same day, because of my schedule.” She said sure, and they’d arrange limos on both ends. “And you need to pay me.” I named a low four figure price.

More awkward silence.

“But this is journalism,” she said.

I tried not to guffaw.

“Well,” I said, “this will cost me a day of work, not counting prep and follow-up, and that’s what I charge to a university when they have me in for a long day. I won’t charge you extra for reasonable research help.” She said she had to ask.

Unsurprisingly, she called me back the next day to say they couldn’t do it. I asked her if they also weren’t paying “Octopus Man.” She said, ashamed, they weren’t.

“Let me ask you,” I said to her, “do you get paid for this?” She said yes. “Would my limo drivers get paid?” Yes. “Does the person who will do my hair get paid? The make-up artist? The person who cleans the studio?” Yes, yes, yes. “Does Dr. Oz get paid?” Yes. “So tell me why you can’t pay me, and why you can’t pay your featured guest, when you’re all making money off of this scene.”

“I see your point,” she said. “But we can’t start paying people to be on the show.”

Right. Because then it would be a 19th century freak show, where the freaks got paid, and then where would we be?

The mate came home and asked about the outcome of my negotiations.

“Apparently,” I answered, “Dr. Oz can’t afford me.”

He smiled. “And you don’t even look as good as you did on Oprah.”

Alice Dreger is a professor of clinical medical humanities and bioethics at Northwestern University Feinberg School of Medicine.

04/21/2011 - 2:08pm
Here is a link to a video of (part of) yesterday's hearing on H.B. 3520.  Actually, it was on the committee substitute to H.B. 3520, which focuses more on the due process procedures than on a straight "treat 'til transfer" requirement.
04/21/2011 - 10:55am

On April 4th, 2011 philosopher Slavoj Zizek spoke in New York City on “The Situation Is Catastrophic, but Not Serious.” This is our attitude towards the ongoing crisis: we are aware of the looming (ecological, social) catastrophes, but we somehow don’t take them seriously. What ideology sustains such an attitude?

04/21/2011 - 10:02am

Raise your hand if every aspect of your body and mind is as good as it could possibly be.

Did anyone out there raise their hand? If you did, I congratulate you. But, if you’re like me, a list of minor malfunctions and maladies that you’d love to fix popped up in your head. None of us are perfect, there is always something to improve. We are, after all, only human. And most of us would jump at a chance to improve some of those little issues....

04/21/2011 - 8:31am

Biggest rock is best rock.


04/20/2011 - 11:46am

For the sake of the children, let’s control human breeding. No one should be permitted to reproduce until they pass a battery of tests.

Does that proposal enrage you? Go ahead, hate me. Call me vile names like “Neo-Nazi-Elitist-Baby-Killing-Totalitarian-Sicko.” Or simply “Eugenicist.” I don’t care. I know I’m right....

04/20/2011 - 9:36am
Marcin Jakubowski, a Polish-American farmer and founder of Open Source Ecology, believes that the only way humanity can transcend its continuing decay of equitable wealth distribution is by endorsing “open source” economic development.
04/20/2011 - 8:20am

Oral arguments in Rasouli v. Sunnybrook Health Sciences Center (Ontario Court of Appeal No. C53442) are scheduled for May 18th.  

04/19/2011 - 9:30pm

--> FREEDOM WRITERS is another in the genre that started with the movie TO SIR WITH LOVE. It tells the story of a desperate inner city high school English teacher (Hilary Swank) forced to get creative. She discovers that every kid in her class, but one, knows first-hand what a Holocaust is. However, every kid in her class but the same one, does not actually know what "The Holocaust” was. This is the story of how a single teacher can change lives.  In films about the transformative power of education, the children are at risks in most ways defined by the Declaration of Human Rights; food, housing, education, safety.  The learning gap between the rich and the poor screams for the principle of justice. However, conflict in the principle of beneficence is more accurate.  Ignorance is the disease to be fixed.  Beneficence is ethical use of knowledge. Beneficence directs what we ought to be doing with the knowledge we have. In principle based ethical decision making, we look for tensions between beneficence, autonomy and justice.  Clarifying the tensions supports the "hunch" that there is an ethical conflict.    In the medical context, beneficence is an obligation to transfer medical information. Information communication requires understanding. How do you make a person understand?In FREEDOM WRITERS, the teacher physically walls her students off from the chaos of the contextual, geopolitical features which bear on justice.  She closes the door to her class room with the kids inside of it. A safe haven is created out of the storm. This is a smart approach when faced with a bioethical dilemma.  You can't control the geopolitical matters that create social injustice so you do what you can. Conflicts are best resolved resulting in suitable action if the order of considerations is weighted; starting with beneficence, then autonomy and finally justice. Our creative teacher takes her students out of the fray. She weights beneficence, or conveying knowledge, as the first priority. In FREEDOM WRITERS, the hook is introducing a group of adolescents to the Holocaust memoir, The Diary of Anne Frank.  Anne's story "de-alienates" the contemporary children. It makes them a part of a broader historical context. The students are freed from the narrow confines of a culture of underdevelopment by exposure to Anne Frank's life and death. It is not necessary to grasps every single aspect of a complex field but a clear conceptual understanding of the trends resultant from key information is important.  If knowledge is not relevant to groups of people themselves, it may not be absorbed.  How groups define themselves is called culture. Cultural relevance gaps frequently limit appropriate distribution of benefits and burdens (Justice) as regards information exchange.    The basis of using film to enhance ethical analysis results from the interchangeable energies associated with narrative forms. Narrative forms include the Aristotelian six arts: dance, music, painting, literature, drama and poetry. Film is referred to as a synergy of all of the arts; becoming Andre Bazin's "seventh art".  What all the arts have in common is narrative.  Narrative forms have historically conveyed morality, through myths, jokes, fables, or religious books.  A specific case is outlined or seen.  The telling case has a theme which guides the observer to a planned engagement, a final conclusion and a resolution as the process finishes.  Using stories or cases to convey morality, is called Casuistry. It seems to work because it connects our common morality, leaving us to feel less alone.  This is how the teacher in FREEDOM WRITERS enhances understanding. The classic format of teacher "rescuing" the under developed children in films, is not always about white folks going to the black ghetto. The genre was initiated by the legendary Sydney Poitier, a black man, cast in TO SIR WITH LOVE.  This teacher changed the lives of working class white English teens.  Class, in the Euro-American context, has become synonymous with race. The most compelling films deal with those who return or stay in their communities to provide change. Examples of this version of the genre include STAND AND DELIVER (Menendez, 1988) and COACH CARTER (Carter, 2005).--> Freedom Writers. dir. (35mm) directed by Richard LaGraveness.  USA. 2007. Paramount. 122 min. To Sir with Love (35 mm) directed by James Clavell. UK. 1967. Columbia. 105 min.

04/19/2011 - 9:24pm

--> During a recent California governor’s election race, ethical tensions surrounding "the American knowledge gaps" were voiced. Most party candidates endorsed the film WAITING FOR SUPERMAN.  WAITING FOR SUPERMAN is a documentary about young American teachers striving to change the broken public education system. This, like other documentaries, tells the story by following individuals who are, in this case, striving for better education. The story also tracks the careers of a number of graduates, trained in Teach for America, as they struggle to build more equitable models of education for American Children. These teacher's gains are modest overall, but large in the communities where they have served. WAITING FOR SUPERMAN argues that communities have not let down the schools so much as schools have let down communities. Accompanying the analysis are truly shocking facts about the ways in which American public school districts are operated. Administrative rigidity appears to be to a detriment to education of the poorest students in the country. In contrast, educators are left to do one of the hardest jobs with limited resources. WAITING FOR SUPERMAN falls short in its analysis of the education gap because it never quite explains the value of education. Many of the kids depicted believe education will get them a good job. The film never corrects this misconception. Though better educated people are shown to have better jobs, all better educated people don't.  Getting a job through education is certainly a passé expectation in the current era.  FREEDOM WRITERS(LaGraveness, 2007), on the other hand, suggests that education enhances human consciousness.  Enhanced human consciousness changes the quality of individual lives; a more reliable outcome than guaranteed employment for most under-resourced communities. Looking at the educational gap more globally provides a better context than race alone. It also leads to more allied existences. TO EDUCATE A GIRL squarely anchors itself in expanding human consciousness. It, like WAITING FOR SUPERMAN, is a documentary. TO EDUCATE A GIRL best addresses all of the dimensions  of ethical  conflicts in education;  beneficence, autonomy and justice issues.  I screened this film at the Mill Valley Film Festival this past October. It is directed by Frederick Rendina and Oren Rudavsky.  It was made primarily with United Nations funds and was undistributed at the time of my viewing. It is, to my mind, the best of the type. TO EDUCATE A GIRL offers a thoroughly modern handling of how to fix significant aspects of the education gap between subsets of classes and universalizes the context. In a paradigm flip, TO EDUCATE A GIRL suggest that the true underclass of concern are the 110 million school aged children, not in school or under-schooled; two thirds of whom are girls. The narrative places the lower status of women squarely in the center of the major conflicts of human development. It weaves the geopolitical contextual features of the two nations of Nepal and Uganda. Both of these nations are fresh out of civil war. TO EDUCATE A GIRL gets high points for demonstrating how people can explore their own cultural attitudes, legacies of religion, colonialism and neocolonialism. It illustrates which attitudes cripple and underdevelop a generation's knowledge. It also highlights those practices which support beneficence, autonomy and justice.Use of modern techniques of radio, television and the public health model of outreach are promoted in TO EDUCATE A GIRL. Equal weight is given to technical and more traditional models of singing and performing stories to guide better understanding. The fierce competition to get into "the best school" as in WAITING FOR SUPERMAN does not exist in TO EDUCATE A GIRL.  The goal instead is getting into school at all. Like the barefoot doctors movement, the film demonstrates a barefoot teacher’s movement. Teachers recruit children from villages by convincing their families to send their children to school. These teachers educate families first. The film also documents boys and men supporting themselves through supporting their sisters and wives aspirations.  It is the enlightened mother's, who wish to protect their girls from the perils of underdeveloped womanhood, who ultimately facilitate the most attitudinal change regarding education.  TO EDUCATE A GIRL provides an honest assessment of real obstacles in girl’s lives. Girls in most cultures, including the developed world, often do domestic work and toil in actual or metaphorical fields. Girls are sent out to work at an early age in under-resourced families. They are reliable as are usually their mothers.  If not working outside of the home, girls are often responsible for raising their siblings and caring for the elderly while the adults are working, dead or incarcerated. In many instances, forced or arranged marriages are required to support a girl’s family. Finally, female child genocide is a feature where agriculture and resources are limited. Girls create more mouths to feed. During war and the aftermath there is cultural destruction. Girls and women are often victimized by sexual assault. This occurs to a greater extent when women and girls are also political prisoners. Here victims of rape in the developed world meet their international sister in post-traumatic stress.  We find a similar circumstance in natural disasters and wherever people are refugeed or decimated en masse. Walking to school can mean losing a girl’s life in many contexts.  All of these are shown in TO EDUCATE A GIRL.  All of these frequently preclude the educational aspirations of girls. Fancy uncrowded classrooms may be ideal; however, they are not sufficient.  A good teacher, on the other hand, can transform even the worst classroom into a learning environment. The best and most creative teachers are needed in the most difficult circumstances.  A good teacher engages the learner. This is not to say they must be touchy feely. Teachers as shown in these films must have an organized program for engagement applicable to the community they teach.  Without engagement there can be no understanding and beneficence becomes a theoretical construct.  Without understanding there can be no autonomy and all the clinical medical ethical devices like informed consent and advance directives become useless.  Without autonomy there can be no transformation of individuals to form just societies. --> Waiting for Superman (DVD) directed by Davis Guggenheim. USA. 2010. Paramount Vantage. 112 min.   -->To Educate a Girl. (DVD) directed by Frederick Rendina and Oren Rudavsky. 2010 USA/Uganda/Nepal Talking Drum Pictures. 2010.  70 min.