[Pophealth] activism from an academic base

[Stephen Bezruchka]

There are many articles in the news these days pertaining to population 
health issues.  There is an opportunity to get attention.  But changing 
the way thins are requires a different approach.  This may be useful 
although it is rooted in the biomedical model. 
STephen
****
http://www.bioethicsforum.org/dreger-activism-and-academia.asp Wednesday, 
September 13, 2006
So You're a Scholar Who Wants to Make Things Happen BY ALICE DREGER

Because for about the last decade I have been a medical humanist working 
to change the way physicians treat people born with socially-challenging 
bodies, I'm frequently asked about doing activism from an academic base. 
Activism-curious academics typically ask about how one goes from thinking 
about critical change to actually effecting it.

Someday maybe just like we require graduate students to take methods class 
in disciplinary research, we'll also require them to learn a little bit 
about effective teaching and outreach. But as we await that time, I'd like 
to share my top ten tips for doing activism from an academic base. I do 
not mean these to be substitutions for classic disciplinary scholarship, 
but rather methods for pushing that scholarship into the light of day. 
These are gathered from my own experience as well as conversations I've 
had from colleagues who have been out getting their hides tanned.

Before we get to my top ten tips, let me start with a little cautionary 
history for fellow and would-be activists. The collection of events now 
known as the Tuskegee Syphilis Study ran from 1932 to 1972 and was aimed 
at finding out what happened to black men with untreated syphilis. 
Although the first study in the series may have been scientifically 
legitimate for the time - there is some historical evidence that it may 
have been - the medical professionals running the Tuskegee Syphilis Study 
kept it going long after penicillin became known as an effective treatment 
for syphilis. Moreover, as time went on, the researchers worked hard to 
make sure the men in the study wouldn't "accidentally" get penicillin. 
They intentionally misled the men, denying them the very name of their 
disease as much as denying them the cure. Tests like blood draws and 
spinal taps were represented as "treatments" in order to make the men 
enrolled in the study think they were really getting medical care, so the 
study could continue uninterrupted by actual care. (Allan Brandt's article 
in the Hastings Center Report in 1978 is still the best analysis available 
of this work.)

Most people who have heard about the Tuskegee Syphilis Study subscribe to 
a myth that the researchers were bad, rogue doctors who secretly carried 
on the experiment out of pure racist hatred. In fact, the researchers 
regularly published their work in journals like Public Health Reports and 
the Journal of Chronic Disease. In other words, the researchers' 
colleagues knew what was going on, and indeed approved the papers through 
peer review. Historical records show only one clinician ever raising an 
objection, in a private letter in 1965, to the persistent withholding of 
penicillin from the subjects. (The letter was filed without response, and 
the study didn't end until a journalist exposed it to the general public 
in 1972.) And the researchers were not generally contemptuous of their 
black male subjects; indeed, one key member of the team was nurse Eunice 
Rivers, an African-American woman who aided in the deception and 
obfuscation and believed, against all reason, that she and the study were 
helping the subjects. The initial funding agency for what became a 
long-term study came from the Julius Rosenwald Fund, a liberal foundation 
that wanted to see the extension of good medical care to the usually 
neglected African-American population in the U.S. south. The Tuskegee 
Institute, a proud, African-American medical institution, participated in 
the study.

The truth is, the Tuskegee Syphilis Study wasn't hidden, and it wasn't 
carried out by bad, overtly racist people. It just went all wrong - it 
went on much too long, long after researchers needed to still be doing 
"basic" research on untreated syphilis. What kept it going? Racism, yes. 
But also institutional (academic) inertia, continued funding and 
publication opportunities, the assumption that good doctors and nurses and 
scholars couldn't do bad things to patients, and a blind belief in the 
purity of "basic" research. And what Martha Solomon Watson has called "the 
rhetoric of dehumanization" within the study's internals records and its 
published reports - that is, specialized language that made the 
researchers sound like passive tools of science, language that made the 
subjects sound like mere sites of disease, and language that 
"highlight[ed] a relatively minor difference (skin color) between groups 
of subjects as it obscure[d] their more numerous and significant 
resemblances" (see Tuskegee's Truths: Rethinking the Tuskegee Syphilis 
Study.)

A few years ago, as I was simultaneously agitating for change among 
pediatric specialists and teaching the history of the Tuskegee Syphilis 
Study to pre-meds, I had an uncomfortable realization. A two-fold 
uncomfortable realization, actually. First, I understood as I hadn't 
before how hard it was going to be to convince clinicians they were doing 
the wrong thing. They knew (as I knew) they were good people with good 
intentions. And there were plenty of academic institutional rewards 
stopping them from seeing what I was seeing.

Second, I understood as I had not before that, like the clinicians whose 
work I was critiquing, I was myself at risk for being a researcher in a 
Tuskegee study. That is to say, I had around me the same kinds of 
institutional blinders and carrots that drove the researchers of the 
Tuskegee study, and I had the same naive idea that my good intentions 
would keep me from doing anything bad. This led to a productive pause, 
after which I started more aggressively finding out what I could about the 
effects of my work. So before I encourage others to tread (or continue to 
tread) the sort of path I have, I want to caution primarily not to get so 
caught up in the moral inertia of your cause that you fail to see where 
you might be doing harm. Reaching out of the ivory tower has serious 
rewards, but those rewards come with costs and risks.

If, after this caution, you still want to proceed to try activism from an 
academic base, here are my suggestions for how to do it effectively:

1. Realize that change happens primarily because of relationships. This is 
just a blatant historical fact, and it means that you cannot hope - as I 
once did - to publish a paper in a specialized journal and see the world 
change. A journal article allows you to think through your ideas, but if 
the publication is the end of it, the only relationships you've built are 
with your reviewers and readers. To make change happen, you have to build 
relationships with the people who can make that change happen. This 
typically means something of a long-term commitment to working with people 
you would not ordinarily work with under the idealized academic career. It 
means getting off email (a stilted form of dialogue that promotes debate 
over collaboration), at least picking up the phone, and preferably having 
a face-to-face with the people who have the power to do what you are 
dreaming of or dreading. I saw Erik Parens of The Hastings Center do this 
to great effect in the Surgically Shaping Children project, where 
bioethicists sat down with actual clinicians and people who grew up with 
socially-challenging bodies and parents of such people. We spent several 
years meeting regularly, really working to understand and make change. 
This has led to extremely productive collaborations between cleft palate 
specialists and intersex specialists interested in pushing for close 
attention to psycho-social well-being of patients, something that never 
would have happened without Erik's work to bring us together.

2. Expand your notion of sources and experts. This means you ask the 
people who are implicated in your work what they think of it (preferably 
pre-publication, to maximize their insights), and you give up a naive 
notion of the distinction between primary and secondary sources. Very 
often the people you're treating as subjects are in fact experts. This 
truth may drive your IRB crazy; I found myself having to press my IRB on 
why intersex activists had to sign a consent form to tell me about their 
lives and learning, but surgeons didn't. (I cynically asked, "Are doctors 
not human, or not subject?") Regulation and outdated caste systems should 
not drive our thinking. I loved watching the radical work Len Fleck did 
using rational democratic dialogue to talk with the non-academic people of 
Lansing about the concept of genetic responsibility. To do this, Len went 
out of the university and to the local hospitals, a perfect symbol of 
meeting people on the real territory of life. It was enlightening to see 
how often our neighbors wanted to know why we academics weren't doing more 
right now to make people safe from genetic discrimination.

3. Don't try to guess who will be grateful for your work . . . but get it 
in writing when they are. Doing this provides important documentation that 
can be useful for employment, tenure, and promotion. It evidences that 
what you've done has had an impact, and it puts outreach on the cognitive 
maps of search committees and P&T committees. It has the added benefit of 
letting the letter-writers know you're proud of working with them. If your 
potential letter-writer doesn't know how a letter like that should sound, 
explain to her or him what kinds of things your chair or dean will 
appreciate knowing.

4. Keep your high standards of scholarship, but, at least when doing 
public work, don't get bogged down in long treatises. Remember that most 
people cannot absorb exquisitely detailed analyses on the first pass. 
Figure out what matters the most, and work on conveying that concept 
first. Always back up your claims with your reasons and evidence, so that 
the value of good scholarship is embedded in your message. Often it works 
well to write several versions of the same kind of paper - one for people 
of the disciplines you want to reach, one for some kind of newsletter or 
website, another as a newspaper editorial. I've seen Howard Brody do this 
beautifully through in his regular column for the community newspaper 
Lansing City Pulse. I've had non-academic neighbors tell me what they 
learned from Howard's columns about helmet laws, health insurance, and 
evidence-based medicine without realizing I know him.

5. Keep a sense of humor. This can help your cause directly - by disarming 
people with laughter - and indirectly - by keeping your sense of balance 
intact. For the former, it often helps to use self-effacing humor that 
signals you're human and you know they're human. (Best not to use physical 
humor, as I have occasionally accidentally done by getting entangled with 
an overhead projector.)

6. Write like it matters and publish where it matters. In other words, 
write and publish like some non-academic's life depends on it. If you're 
trying to achieve a political goal (and what goal worth achieving isn't at 
some level political?), consider studying powerful political discourse and 
using the techniques employed there. Some of the most influential public 
intellectuals have been real researchers who knew how to write well. 
Stephen Jay Gould was smart enough to write about the beauty of science in 
a way any intelligent high school student could understand and appreciate. 
Rachel Carson had the same power of prose. Imagine if both of them had 
left their work to the confines of academic journals.

7. Get media training early. If you want to change the great beast vaguely 
called "society," you need the media. Many reporters and producers are 
smart, careful people. But some aren't, and some suffer from dreadful 
editors. Media training can help you be prepared to get your message 
across and avoid being misrepresented. I'm still grateful for the 
university media trainer who told me "If you're working with TV crews, 
assume the camera is always on, and never say anything that can be easily 
edited to twist your point." This advice saved me from a potentially 
horrific experience with a TV news producer who was determined to get me 
to say "Doctors murder children" when they do sacrifice separations of 
conjoined twins. (I thus knew not even to say, "I don't think doctors 
murder children when they do sacrifice surgeries," since the start of my 
sentence could be cut out.) Good media trainers will help you understand 
how to prepare to talk with reporters, how to be effective on camera, and 
how to make your point compelling. (My own primary suggestion: Tell a 
story, and then use that story to make your point.)

8. Don't make satisfaction of your ego the cause you're fighting for. Take 
this advice from someone who once wasted an embarrassing amount of time 
and energy trying to prove she wrote down an obvious point first.

9. Recognize your mistakes, and forgive your detractors their mistakes. If 
you don't do this, then you and the folks on the other sides of your 
issues will become entrenched and immobilized. Admit it when you've been 
wrong; you'd be surprised how quickly the other person meets you in the 
middle. I've discovered my presentations to intersex clinical teams work 
much better when I start by saying what I have been wrong about.

10. Good intentions are not enough; check regularly on your effects. 
Especially if you consider yourself a good liberal, think about the really 
scary lesson of Tuskegee while you rack up the bruises and rewards of your 
work.

While I want to encourage (even demand) more activism from bioethicists 
and other academics, I do not believe I am being anti-intellectual. There 
is no question in my mind about the value of intellectualism. I do think, 
however, that is time to have a more critical, spirited conversation about 
the social responsibility of the academic in today's world. And after we 
have that conversation - or even while we have it - we should also get up 
and act. Something is actually happening. We should also make things 
happen ourselves.