Monday, December 31, 2018

My Top 5 Blog Posts of 2018

As we end another year, here's a look back at the five posts on this blog that received the most page views in 2018.

1. Stop Calling It Strategic Planning
This has been on every year-end list since it was originally posted in January 2012, and keeps getting a ton of traffic, including as the page through which the highest number of people enter my site. It was inspired by the take-down of strategic planning in Humanize, and in it I pledge to stop using that term to describe the messy, constantly evolving process my association uses to determine our direction and set our objectives. In laying out the guidelines that govern our activities, I realize that only one term makes any sense--association management.

2. The 4 Disciplines of Execution by Chris McChesney, Sean Covey and Jim Huling
This one was originally posted in May 2014, and returns for a fifth placement on these year-end lists. It summarizes my takeaways from the book The 4 Disciplines of Execution. The book's subtitle is “Achieving Your Wildly Important Goals,” and it contains a deceptively simple and oddly compelling system for doing exactly that--with a lot of potential applicability for associations. Among the many practical tools it taught me was the need to create "winnable games" for your team to go after, with regular and visual scorecards showing the team's progress towards each goal. As the authors continually remind the reader, people play differently when they are keeping score. When they can see at a glance whether or not they are winning they become profoundly engaged.

3. The Chairman's Gift
Originally posted in July 2012, this one has now been on six of seven possible year-end lists. It tells the story about how my association ensures that our outgoing Board Chair receives a gift that recognizes not just his service to the association, but the fact that he is an individual who has made a personal sacrifice to serve in that capacity. The true value is the message it sends to others who might be considering a similar commitment in their futures.

4. Membership Sales Is About More Than Just Increasing Membership Numbers
This is a newcomer to the list -- and one that was actually posted this year! In it, I describe an epiphany I had, as the title suggests, that the efforts my association puts into increasing our membership numbers are, ultimately, about something more than just increasing membership numbers. They are also very much about defining and shaping the value proposition that our association offers its members. A sales discussion is an opportunity to sell something, of course, but it is also an opportunity for crucial market research and education.

5. The Crucible by Arthur Miller
This first appeared on the list last year, having been originally posted back in January 2015. It's one of the many "mini term papers" I tend to offer up, free of charge, to desperate freshman English majors the world over. My overall theses: This is a play about the balance between order and freedom, and specifically order’s ultimate triumph over its weaker counterbalance. The historical setting is, of course, the Salem witch trials of the 1690s. The order is that of the theocratic state, its functionaries able to convict, jail and hang those they determine to be in league with the Devil. The freedom is that of John Proctor, his wife Elizabeth, and their fellow villagers, who are held hostage by the accusations of a group of vengeful teenage girls. It may seem silly to our modern sensibilities, but these people very much believed in God and the Devil, and the way the two of them battled for people’s souls right here on earth. And Miller paints no one in his drama as a fool, just as people with clashing motivations interpreting the world as they understand it.

My thanks to everyone who has been reading what I've been putting up here. I hope you plan to stay engaged in 2019.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.

Image Source
http://www.aeras.org/blog/looking-ahead-2018



Monday, December 24, 2018

A Holiday Break: The Bell by Iris Murdoch

Books are always the best holiday gift for me. The only thing I like better than the anticipation of reading a long sought after title is the fondness that comes with remembering the discovery of an unexpected treasure.

As I look back on all the books I've profiled here in 2018, the one I'd most like to revisit is The Bell by Iris Murdoch. I blogged about it back in September, and found it to be a novel rich in the interior lives of its characters, where dark and foreboding shapes of the “not wholly describable thinginess of the physical and moral world” emerge slowly out of the fog of character thought and action.

It is also a novel that underscores the importance of art in a dark and turbulent world. One of the central characters is Dora Greenfield, a former art student, and now the disillusioned wife of one Paul Greenfield, an art historian spending a summer at the Abbey that forms the backdrop of the novel. At one point in the narrative, she flees from her husband and from the lay community near the Abbey and visits the National Gallery in London, a place she had been in “a thousand times,” where “the pictures were almost as familiar to her as her own face.”

Dora was always moved by the pictures. Today she was moved, but in a new way. She marvelled, with a kind of gratitude, that they were all still here, and her heart was filled with love for the pictures, their authority, their marvellous generosity, their splendour. It occurred to her that here at last was something real and something perfect. Who had said that, about perfection and reality being in the same place? Here was something which her consciousness could not wretchedly devour, and by making it part of her fantasy make it worthless. Even Paul, she thought, only existed now as someone she dreamt about; or else as a vague external menace never really encountered and understood. But the pictures were something real outside herself, which spoke to her kindly and yet in sovereign tones, something superior and good whose presence destroyed the dreary trance-like solipsism of her earlier mood. When the world had seemed to be subjective it had seemed to be without interest or values. But now there was something else in it after all.

That, in the end, may be the most important aspect of art, be it paintings in the National Gallery, or interior novels by Iris Murdoch. It provides an objective rock in the sea of subjectivity we otherwise find ourselves swimming in.

As you enjoy your holiday break, I hope you find some time to curl up with a good book. I know I will.

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This post was written by Eric Lanke, an association executive, blogger and author. For more information, visit www.ericlanke.blogspot.com, follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.

Saturday, December 22, 2018

The Association CEO Handbook by Paul A. Belford

The subtitle here is “A Personal Guide to Leadership and Career Fulfillment in Association Management.” How it came into my possession I no longer remember, but my copy is signed by the author himself.

Sept 25, 2013
Eric -
Thought you might find this of interest.
Best regards
Paul Belford

Did I meet Paul somewhere, at one of the many conferences I attend? Did I hear him speak and was so moved by his presentation that I bought his book and had him sign it at the author’s table in the foyer? I doubt it. More likely, he sent it to me unsolicited, hoping that I would be intrigued and book him as a speaker at one of my own conferences.

No matter. What, if anything, did I find of interest? Just this:

Imagine yourself at your 25th college reunion. It opens at the student union and there’s a whole bunch of folks around by the time you arrive. You’re walking in, cool, hair right, looking for some classmates you’ve arranged to meet when up comes someone you recognize, but haven’t a clue as to the name.

This comes near the end of Belford’s book, after he has walked the reader through numerous bugaboos of the association industry and the essential elements of being an effective staff executive.

You remember thinking back once that you might have been close friends if you had been in the same carpool or dorm… No matter now, What’s the name? You smile and nod. Awkward is how you feel as you hear your name spoken. “Pat!” (That’s you, you’re Pat.) You smile. Without the name, in the game of social encounter, you’re already down one. And of course there’s that look of success. Down two? “So, Pat, tell me, how goes it? Life’s been good?”

Issues vs. services, Board vs. staff-driven, benefits to membership, networking, organizational profile, industry/profession life cycle, Board governance, membership composition, culture, member/staff relations, mission vs. momentum, mission alignment, resource relationships, vision statement, membership engagement, planning. Belford has talked you through all of these issues and, seeing that this is a handbook, has tried to lead you through several exercises to better understand what they mean for the organization you’re leading.

Now what do you say to that. ‘Well, actually, I just spent the entire remainder of my most recent bankruptcy on the ticket to fly out here and tell everyone all about it.’? Easy, now. None of that… The name, What’s the name? Stalling, you come back with “Great. Really great. Looking pretty good yourself…” That’s it, take the initiative, that’s the rule. The name will come. “And what’ve you been up to?”

Belford is weaving a story here. Not sure where he’s going, but he titled this short chapter “Personal Identity” and he gave us a warning in his short introduction. It may be a little off-beat, but we may find it useful.

“Hollywood.” A big grin, but fun. No bragging, here, just fun, pleasant. You work on your smile, good eye contact, that’s the rule, keep it moving and the name will come, be positive…

“Private banking of a sort. We finance movies and advise the stars on what to do with all their money. Tons of fun, tons.” A smile and nod. “And you? An Accounting major, right?”

Where is Belford going with this?

You’ve been the CEO of the American Widget Manufacturers Association for four good years, and loving every minute of it… and the name comes, Leigh Smith! That’s the name. Sat next to you in Cost Accounting. Not a bad sort at all, really. Your mind flashes back to the mini-rally Leigh organized for your soccer team as it boarded the bus for the conference finals senior year. A big win, the biggest.

You’re relaxing now, an easy breath taken, feeling good, more memories coming, you’re among friends … and Leigh’s one of them. A smile comes to your face and you’re home again … this is why you came…

And for Leigh’s question? Well, there are two ways you can go--

--”Widgets, I’m in widgets,” or

--”I’m an association executive.”

Much of a difference? Could be. Could be huge.

What’s your answer?

It’s fair to say that this is the only chapter in Belford’s book that was of interest to me … and it’s something I think he should have led with, not saved for near the end. Any association executive looking for a “personal guide to leadership and career fulfillment” has to absolutely start with the mindset that they are first and foremost an association executive, not “in widgets.”

Indeed, the rest of Belford’s handbook will make little sense to anyone who thinks of themselves as in the industry that their association represents. He might as well put the question on page one, with the instruction that if you say anything other than “I’m an association executive,” you can be spared from reading any further.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.



Monday, December 17, 2018

Program Goals and Marketing Objectives

I've been thinking this week about metrics for the marketing and communications function of my organization. Specifically, what's the best way to measure the contribution of our marketing efforts in the achievement of our program goals?

Maybe I need to explain that. In my organization there are program goals. We want to recruit new members. We want to increase the number of members attending our conferences. We want more members to volunteer their support for our workforce development programs.

In order to help achieve those goals, we engage in a variety of different marketing activities. We deliver information about our association and its benefits to our membership prospects. We populate our weekly e-newsletter with information about our conferences. We solicit members at those conference to become volunteers.

Holding these marketing activities up to the metric of the program goal seems wrong. In other words, if we fail to increase the number of members attending a particular conference, while having populated the weekly e-newsletter with information about that conference, we shouldn't say that the marketing activity failed because the program goal wasn't reached. There should be some other metric, some other objective that we can set that will measure the success of the marketing activity.

Following this logic typically leads an organization to what I call activity rather than outcome metrics. In this example, an increased number of members at the conference is the outcome we're seeking, so measuring that is an outcome metric. One of the activities we engage in to achieve that outcome is placing a promotional article in each week's e-newsletter. Publishing articles is not the outcome we seek, it is an activity that we believe will lead us to the outcome, so measuring how many articles we publish is an activity, not an outcomes, metric.

One problem I often see is a conflation of these outcome and activity metrics -- that measuring the success of an activity that supports the outcome becomes the same thing as measuring the success of the outcome. As a result, the organization is question quickly finds itself in the "business" of publishing articles. Substantial attention is paid and rewards begin to be offered, not to increasing conference attendance, but to publishing articles in the e-newsletter. "What else do you expect us to do?" an executive might hear once this mindset has taken over. "We published more articles in our e-newsletter than we ever have before!"

Avoiding this problem is what I've been thinking about this week. One way might be to focus attention not on the volume of the marketing activity that is taking place, but on the effectiveness of the marketing activity in delivering its message to the intended audience. In other words, stop counting how many articles you publish, and start tracking (and driving up) how many members click on the link in each article that takes them to your conference's registration page.

This should not only give the marketing department of your organization marketing objectives to hit (i.e., we need to increase our click-through rates on published articles about our conference), but, by focusing these objectives on improving the effectiveness of your marketing activities, you should be increasing marketing's overall contribution to achieving the program goal itself.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.

Image Source
https://www.formaliti.com/measuring-success/





Monday, December 10, 2018

Constraints + Creativity = Innovation

My association sponsors an undergraduate education program we call the Fluid Power Vehicle Challenge. Essentially, it challenges undergraduate engineers to design and build a human-powered vehicle (typically a bicycle, but not always) that uses my industry's technology (i.e., hydraulics) as the method of propulsion.

It's awesome. Responding to the distressing lack of fluid power education in our nation's undergraduate mechanical engineering programs, we now have a way to engage students with a hands-on application of our technology. The students are generally seniors, who claim the vehicle as their capstone design project, earning credit while at the same time interacting with mentors in my association's member companies to make sure their designs are safe and effective. They learn fluid power, and the mentors recruit them into positions in their companies. We're in our third year of sponsoring the program, and we have a record number of 15 universities participating.

One difficulty we've had with the program is that the design challenge itself is hard. Hydraulic systems are typically driven by an electric motor or internal combustion engine (what our engineers call a "prime mover"); and we're telling our students that they can't use either. The vehicles are meant to be human-powered. This means that the students themselves have to take the place of the prime mover. They can only pedal so fast, and that can only produce so much flow to make the hydraulic system work.

We've been wringing our hands for the last three years, trying to figure out what to do about this problem. One of the goals of the program is to get these engineering students excited about fluid power, and if they determine that, because of the limitation that we've put on them, fluid power is just too hard to work with -- then we're actually hurting ourselves by doing it. Some of our industry mentors have suggested that we let the students use a small internal combustion engine (the kind you might find on a lawnmower) in order to let them see and experience the true capabilities of hydraulics. It is, after all, an extremely power dense technology. It's very claim to fame is the ability to provide a ton of power in a very small package.

I've resisted making this change, primarily for safety reasons, but also because the idea of "adding an engine" would require us to redesign the entire program. The whole program culminates in three competitions: a sprint race, an efficiency challenge, and an endurance race. Right now, with human-powered vehicles, these are challenging tests for the vehicles and their riders to perform. Add an engine, and the vehicles essentially become hydraulic go-karts, easily racing around for as long as there is gasoline in their tanks.

But while we've been wringing our hands, something else has been slowly happening. The student teams have been applying their collective intelligence and creativity to the problem. We open-source all the designs pursued each year, so each new team has a growing record of successful and unsuccessful experiments to draw on when putting its ideas together. And slowly, in an iterative fashion, the student teams are figuring out how to make efficient and swift-moving vehicles, even given the limitations that we've placed on them. Just check out this video the vehicle designed and built by last year's team from Murray State University:



Pumping with their arms, steering with their feet, tapping their hydraulic accumulator for bursts of acceleration, the vehicle is a marvel to behold. And this year's Murray State team, we know, is hard at work at making further improvements to this design. Whereas last year's vehicle topped out at 30 miles per hour, the creative and motivated students at that university this year have set their sites on breaking 50.

In many ways, it is a textbook example of innovation -- and how it is design constraints themselves, coupled with creativity, that allows it to flourish.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.

Image Source
http://nfpahub.com/fpc/vehicle-challenge/final-competition-fpvc/


Saturday, December 8, 2018

The Immortal Life of Henrietta Lacks by Rebecca Skloot

A lot has already been written about this book. And from my point of view, it stands up very well to all the attention it had received.

Tons of focus seems to be on what was taken from Henrietta Lacks without her permission, and whether or not her family should share in the benefits that have come as a result.

An Era Without Informed Consent

Like a reporter, Skloot is careful to document the facts of the case.

Henrietta went straight to the admissions desk and told the receptionist she was there for her treatment. Then she signed a form with the words OPERATION PERMIT at the top of the page. It said:

“I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: __________________.”

Henrietta printed her name in the blank space. A witness with illegible handwriting signed a line at the bottom of the form, and Henrietta signed another.

That, evidently, was it. Informed consent and signing away of rights of bodily integrity, all in an era in which such terms and concepts were all but unknown. Whether Lacks was aware of it, or even in a position to give her consent, samples were collected as they were from all other patients seen in that hospital for the same procedure.

With Henrietta unconscious on the operating table in the center of the room, her feet in stirrups, the surgeon on duty, Dr. Lawrence Wharton Jr., sat on a stool between her legs. He peered inside Henrietta, dilated her cervix, and prepared to treat her tumor. But first -- though no one had told Henrietta that [Dr. Richard Wesley] TeLinde was collecting samples or asked if she wanted to be a donor -- Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish.

But there are a lot of complicating factors. There was no law or code of ethics at the time that required doctors to ask permission before taking tissue from a living patient. Indeed, doctors of the era were known to do much worse than surreptitiously take samples from their patients.

In February 1954, [virologist Chester] Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who’d recently been hospitalized for leukemia, then pushed the plunger, injecting about five million of Henrietta’s cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he’d know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta’s cancer was growing on her arm. He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells.

Intentionally injecting patients with cancerous cells without telling them (or perhaps even knowing) the risks. Lying to them, in fact. All of the patients that Southam did this to developed hard, cancerous tumors like the ones that had grown initially inside Henrietta Lacks (HeLa, get it?). Most of these tumors he was able to remove, but in four of his patients, these nodules of cancer kept growing back.

He removed them, but they returned again and again. In one patient, Henrietta’s cancer cells metastasized to her lymph nodes.

Oh well. You have to break a few eggs to make an omelette, right? But injecting the most aggressive cancer ever discovered into other cancer patients wasn’t good enough for Southam. He wanted to inject HeLa into healthy people. He needed, you know, a control group. So he turned to a group of men imprisoned at Ohio State Penitentiary, who had volunteered for similar experiments of Southam’s in the past.

Sixty-five prisoners -- murderers, embezzlers, robbers, and forgers -- lined up on wooden benches for their injections. Some wore white hospital garb; others came off work gangs wearing blue dungarees.

At least is can be said that some rudimentary form of informed consent was at work with these prisoners. When asked why they would volunteer for such a risky test…

The prisoners’ replies were like a refrain: “I done a girl a great injustice, and I think it’ll pay back a little bit what I did to her.” “I believe the wrong that I have done, in the eyes of society, this might make right on it.”

But not all of Southam’s victims were volunteers. Did that matter to him? After all, he was pursuing a higher calling.

In a statement he’d later repeat again and again during hearings about his research, Southam wrote, “It is, of course, inconsequential whether these are cancer cells or not, since they are foreign to the recipient and hence are rejected. The only drawback to the use of cancer cells is the phobia and ignorance that surrounds the word cancer.”

Because of that “phobia and ignorance,” Southam wrote, he didn’t tell patients the cells were cancerous because he didn’t want to cause any unnecessary fear. As he would say, “To use the dreaded word ‘cancer’ in connection with any clinical procedure on an ill person is potentially deleterious to that patient’s well-being, because it may suggest to him (rightly or wrongly) that his diagnosis is cancer or that his prognosis is poor. … To withhold such emotionally disturbing but medically nonpertinent details … is in the best tradition of responsible clinical practice.”

Skloot correctly points out that the deception was not for the benefit of his patients, but for his own, for certainly fewer patients would have agreed to be part of his medical experiments if they had known what he was doing to them.

But Southam was far from the only doctor who acted this way. This was an era in which the idea of informed consent did not exist, in which doctors routinely did what was best for their research interests. It was not until the horrors of the Tuskegee experiment became public -- and its comparisons to the medical ethics of the Nazi regime -- that things began to change.

You Still Don’t Own Your Tissues

Unfortunately, the medical profession is no less conflicted today on a similar issue. Although it is now more or less universally understood that doctors can’t perform research on humans without first documenting that they have obtained informed consent from them, the larger issue raised by Skloot’s book and Henrietta Lacks’s case -- that of a person’s ownership of their bodily tissues -- remains murky and unresolved.

Much of the medical profession actively opposes the idea.

David Korn, vice provost for research at Harvard University, argues that giving patients control over their tissues is shortsighted. “Sure,” he says, “consent feels nice. Letting people decide what’s going to happen with their tissue seems like the right thing to do. But consent diminishes the value of tissue.” To illustrate this, Korn points to the Spanish flu pandemic. In the 1990s, scientists used stored tissue samples from a soldier who died in 1918 to re-create the virus’s genome and study why it was so deadly, with hopes of uncovering information about the current avian flu. In 1918, asking that soldier’s permission to take tissues for this kind of future research would have been impossible, Korn says. “It was an inconceivable question -- no one even knew what DNA was!”

Korn’s argument is persuasive as far as it goes, but it assumes that owners of tissue would need to consent to every future use of their tissues. A more blanket permission could conceivably be given -- much the the consent now routinely used for organ donation. Those donors don’t get a say in what their organs may be used for. But, honestly, I don’t know how seriously I should be taking Korn’s arguments, since he reveals some pretty sloppy thinking the the very next paragraph.

For Korn, the consent issue is overshadowed by a public responsibility to science: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge and to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.” The only exception he would make is for people whose religious beliefs prohibit tissue donation. “If somebody says being buried without all their pieces will condemn them to wandering forever because they can’t get salvation, that’s legitimate, and people should respect it,” Korn says. But he acknowledges that people can’t raise those objections if they don’t understand their tissues are being used in the first place.

So, let me get this straight. Right now, tissues are routinely taken for research without obtaining consent or even disclosing to the donors that it is happening. And that’s the way it should stay -- unless someone has a religious objection. If you have ethical concerns, or evidence-based reasons why someone shouldn’t use your tissues without obtaining your consent: tough, you have a moral obligation to advance knowledge and help others. But if your objection is religious in nature, then you no longer have that moral obligation? Better not to risk you “wandering forever because you can’t get salvation.”

Despite my derision, I think I actually agree with the concept that people are morally obligated to advance knowledge and help others. But there have to be some limits and what can be taken from you without your consent and how it can be used. And some of the things now happening in this space legitimately leave me scratching my head.

Gene patents are the point of greatest concern in the debate over ownership of human biological materials, and how that ownership might interfere with science. As of 2005 -- the most recent year figures were available -- the U.S. government had issued patents relating to the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma, colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, scientists, and universities control what research can be done on those genes, and how much resulting therapies and diagnostic tests will cost.

When I read this my first instinct was that it had to be wrong. The “gene for Alzheimer’s,” for example, if such a thing really exists, is, as far as I understand, biologically identical in every person that it occurs in. If my grandmother had it, and if I also have it, then those two genes are the same genes. Perhaps not comprised of the exact same materials, but functionally indistinguishable from one another. They’re kind of like two of the same kind of cakes made from two bags of the same brand of sugar. They’re not made of exactly the same sugar molecules, but they are otherwise identical to one another. If I’m thinking about this right, then how can someone else own a patent for the genes in my own body?

And sure enough, it turns out someone can’t. Patents on naturally-occurring genes were outlawed by the U.S. Supreme Court in 2013, a few years after Skloot’s book was published.

Human Tragedy and Magical Thinking

But my focus while I read this book was frankly less on these medical and ethical issues, and more on the human tragedy that seems to surround Henrietta and her family.

In the wake of Lacks’s death, a cousin named Ethel moved into her home to help care for her children. The family gossip was that Ethel was more interested in Henrietta’s widower husband than her children, and that certainly seemed to be the case.

Henrietta’s children grew up hungry. Every morning Ethel fed them each a cold biscuit that had to last them until dinner. She put latches and bolts on the refrigerator and cupboard doors to keep the children out between meals. They weren’t allowed ice in their water because it made noise. If they were good, she’d sometimes give them a slice of bologna or a cold wiener, maybe pour the grease from her bacon pan onto their biscuit, or mix some water with vinegar and sugar for dessert. But she rarely thought they were good.

[Henrietta’s oldest son] Lawrence came home from the military in 1953 and moved into a house of his own -- he had no idea what Ethel was doing to his brothers and [his sister] Deborah. As the children grew, Ethel woke them at dawn to clean the house, cook, shop, and do the laundry. In the summers she took them to Clover, where she’s send them into the fields to pick worms off tobacco leaves by hand. The tobacco juice stained their fingers and made them sick when it got in their mouths. But they grew used to it. The Lacks children had to work from sunup to sundown; they weren’t allowed to take breaks, and they got no food or water until nightfall, even when the summer heat burned. Ethel would watch them from the couch or a window, and if one of them stopped working before she told them to, she’d beat them all bloody. At one point, she beat Sonny so badly with an extension cord, he ended up in the hospital.

I’m no psychiatrist, but it seems safe to conclude that Ethel was a sick woman, whose perceptions of reality were twisted by her own feelings of jealousy and inadequacy. She took out her anger and frustrations on all the children of her former rival, but as Skloot goes on to explain, Ethel reserved her bitterest rage for Henrietta’s youngest son, Joe.

Sometimes [Ethel] would beat Joe for no reason while he lay in bed or sat at the dinner table. She’d hit him with her fists, or whatever she had close: shoes, chairs, sticks. She made him stand in a dark basement corner on one foot, nose pressed to the wall, dirt filling his eyes. Sometimes she tied him up with rope and left him down there for hours. Other times she left him there all night. If his foot wasn’t in the air when she checked on him, she’d whip his back with a belt. If he cried, she’d just whip him harder. And there was nothing Sonny or Deborah could do to help him; if they said anything, Ethel just beat them all worse. But after a while it got to where the beatings didn’t bother Joe. He stopped feeling pain; he only felt rage.

The damaging effects of all this abuse on Joe should have been plain for all to see.

The police came by the house more than once to tell [Henrietta’s husband] Day or Ethel to pull Joe off the roof, where he was lying on his stomach, shooting strangers on the sidewalk with his BB gun. When the police asked what he thought he was doing up there, Joe told them he was practicing to be a sniper when he grew up. They thought he was joking.

But, inexplicably (to my way of thinking, at least), the family came to blame Joe’s anti-social behavior on something else.

Joe grew into the meanest, angriest child any Lacks had ever known, and the family started saying something must have happened to his brain while he was growing inside Henrietta alongside that cancer.

Yes. That’s right. Years of child abuse had nothing to do with it. Gestating inside of mother with cervical cancer must be the answer. It’s magical thinking. And it permeates generations of Lackses and the people that populate Skloot’s moving portrait.

Even Joe (who later changed his name to Zakariyya) suffers from the cognitive dissonance.

“I think them cells is why I’m so mean,” he said. “I had to start fightin before I was even a person. That’s the only way I figure I kept them cancer cells from growin all over me while I was inside my mother. I started fightin when I was just a baby in her womb, and I never known nothin different.”

Deborah thinks it was more than that. “That evil woman Ethel taught him hate,” she said. “Beat every drop of it into his little body -- put the hate of a murderer into him.”

Zakariyya snorted when he heard Ethel’s name. “Livin with that abusive crazy woman was worse than livin in prison!” he yelled, his eyes narrowing to slits. “It’s hard to talk about what she did to me. When I get t thinkin about them stories, make me want to kill her, and my father.”

In the same moment that he is able to express anger at Ethel and her abuse of him, he is unable to connect it to his own violent temper and uncontrolled rage. It’s the cells. It’s HeLa. That’s why he is so mean.

Deborah

Henrietta’s daughter Deborah is very much the protagonist of Skloot’s book. It is Deborah that Skloot spends the most time with and who serves as her primary portal into the Lacks family history.

Growing up in the same house as Ethel, Deborah experienced abuse that was similar to that of her brothers. But after she and her brothers moved out and into the home of her brother Lawrence and his new wife Bobbette, a special kind of abuse was brought upon her by Ethel’s husband, Galen.

Deborah was ten years old. … She tried to tell Day when Galen touched her in ways she didn’t think he was supposed to, but Day never believed her. And Ethel just called Deborah words she’d never heard, like bitch and slut. In the car with Day driving and Ethel in the passenger seat, and everybody drinking except her, Deborah would sit in the back, pressed against the car door to get as far from Galen as she could. But he’d just slide closer. As Day drove with his arm around Ethel in front, Galen would grab Deborah in the backseat, forcing his hands under her shirt, in her pants, between her legs. After the first time he touched her, Deborah swore she’d never wear another pair of jeans with snaps instead of zippers again. But zippers didn’t stop him; neither did tight belts. So Deborah would just stare out the window, praying for Day to drive faster as she pushed Galen’s hands away again and again.

Imagine this scene. A ten-year-old girl. Sitting in the back seat of a car while her father has his arm around a woman that is not her mother. And while the husband of that woman is in the backseat with her, forcing his hands into her pants.

It gets worse.

When Deborah got to Galen’s house, she found him lying naked on the bed. She’d never seen a man’s penis and didn’t know what it meant for one to be erect, or why he was rubbing it. She just knew it all felt wrong.

“Ethel want a six-pack of soda,” Galen told Deborah, then patted the mattress beside him. “The money’s right here.”

Deborah kept her eyes on the floor and ran as fast as she could, snatching the money off the bed, ducking when he grabbed for her, then running down the stairs with him chasing after her, naked and yelling, “Get back here till I finish with you, Dale! You little whore! Just wait till I tell you father!” Deborah got away, which just made him madder.

Galen did tell Deborah’s (or Dale, as she was known in the family) father.

Deborah had started scrubbing people’s floors and ironing for small amount of money. She’d try to walk home alone after work, but Galen would usually pick her up along the way and try to touch her in the car. One day not long after her twelfth birthday, he pulled up beside Deborah and told her to get in. This time she kept walking.

Galen jammed the car into park and yelled, “You get in this damn car girl!”

Deborah refused. “Why should I get in?” she said. “I ain’t doing nothing wrong, it’s still daylight and I just walkin down the street.”

“Your father is looking for you,” he snapped.

“Let him come get me then! You been doin things to my body you ain’t supposed to do,” she yelled. “I don’t want to be nowhere with you by myself no more. Lord gave me enough sense to know that.”

She turned to run but he hit her, grabbed her by the arm, threw her into the car, and kept on having his way with her. A few weeks later, as Deborah walked home from work with a neighborhood boy named Alfred “Cheetah” Carter, Galen pulled up alongside them, yelling at her to get in the car. When Deborah refused, Galen raced up the street, tires screaming. A few minutes later he pulled up beside her again, this time with Day in the passenger seat. Galen jumped out of the car, cussing and screaming and telling her she was a whore. He grabbed Deborah by the arm, threw her in the car, and punched her hard in the face. Her father didn’t say a word, just stared through the windshield.

I guess my point is that these people -- Joe and Deborah and many other members of the Lacks family -- were abused. And the portrait that Skloot offers of Deborah in her later years, when Skloot was working with her to learn and expose the things that had happened to her mother -- is a direct result of this abuse.

Deborah’s was a world without silence. She yelled, punctuated most sentences with a raspy, high-pitched laugh, and maintained a running commentary on everything around her: “Look at the size of those trees!” “Isn’t that car a nice green!” “Oh my god, I’ve never seen such pretty flowers.” She walked down the street talking to tourists, sanitation workers, and homeless people, waving her cane at every person she passed, saying “Hi there, how y’all doin?” again and again.

Deborah was full of oddly charming quirks. She carried a bottle of Lysol in her car that she would often spray at random, only half-joking. She sprayed directly in front of my nose several times when I sneezed, but mostly she sprayed it out the window when we stopped somewhere that looked particularly unsanitary, which happened often.

These are not “oddly charming quirks.” They are signs of mental illness, of a flawed understanding of the world around her and the way it works. Deborah’s ups and downs are dramatic and sometime violent, and although Skloot never calls her manic depressive or bipolar, it’s difficult to reach another conclusion.

Elsie

Deborah had an older sister. Her name was Elsie, and Deborah never knew her because she was mentally impaired and was institutionalized in Crownsville State Hospital at a young age. After Henrietta died, she was more or less forgotten about. With Skloot’s help, Deborah is finally able to learn what became of her, and the facts are nothing short of gruesome.

The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population of Crownsville was at a record high of more than 2,700 patients, nearly eight hundred above maximum capacity. In 1948, the only year figures were available, Crownsville averaged one doctor for every 225 patients, and its death rate was far higher than its discharge rate. Patients were locked in poorly ventilated cell blocks with drains on the floors instead of toilets. Black men, women, and children suffering with everything from dementia and tuberculosis to “nervousness,” “lack of self-confidence,” and epilepsy were packed into every conceivable space, including windowless basement rooms and barred-in porches. When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren’t separated by age or sex, and often included sex offenders. There were riots and homemade weapons. Unruly patients were tied to their beds or secluded in locked rooms.

It was barbaric. And it is, unfortunately, the unremitting history of the world. A long and eternal river of human suffering, channeled by ignorance, fear, and loathing.

And it gets worse.

I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled, “Pneumoencephalographic and skull X-ray studies in 100 epileptics.” Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of fluid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects -- crippling headaches, dizziness, seizures, vomiting -- lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, in was abandoned in the 1970s.

There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents. Based on the number of patients listed in the pneumoencephalography study and the years it was conducted … it most likely involved every epileptic child in the hospital, including Elsie. The same is likely true of at least one other study, called “The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy,” which involved inserting metal probes into patients’ brains.

Medical experiments on a marginalized population without consent. It is a fitting coda to Skloot’s sad and tragic tale.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.


Monday, December 3, 2018

Traveling Is So Much Fun

I flew in and out of LAX this week. It's not a frequent airport for me -- I can't even remember the last time I was there. But something happened there that I thought was worth blogging about.

When I arrived for my return flight home I didn't at first recognize anything as unusual. My Uber driver dropped me off curbside, I got my boarding pass from the automated machine, I found the TSA pre-check line and went through security. All normal. But when I got into the gate area something was very different.

Live musicians were playing on professional sound systems. Scores of people were wearing white "I LOVE LAX" t-shirts. Airport muckety-mucks in three-piece suits were scattered about in unusual numbers. Several TV cameramen were moving about, capturing B roll or chronicling stand-up interviews. And amidst it all, many of my fellow travelers seemed to stumble around in happy amazement. Look at all the glitz. Look at all the pretty people.

Needless to say, I was not one of them. I was annoyed, not amazed. I was just trying to get to my gate. Can you get out of my way, please?

At the gate I asked the agent what was going on. Was this a brand-new terminal or something?

No, she said, but the food court is new. They opened it recently and today they decided to have a media event.

I looked over at the food court. Most of the brands were unfamiliar to me, but the options weren't. Coffee. Burgers. Burritos. Pizza by the slice. Chicken sandwiches. That's it? Really?

The gate agent gave me an understanding look. What are you going to do?

Look, don't get me wrong. I spend a fair amount of time in airports, and I appreciate any of all efforts to make them more pleasant places to spend that time. But here I was, traveling home after attending another conference, stuck with a humorless Uber driver for an hour in Los Angeles traffic, trained by TSA to keep my electronics and carry-on liquids to an absolute minimum, and looking only for a quick bite to eat, an electrical outlet, and a WIFI connection before folding myself into an uncomfortable coach seat for the next four hours -- and all around me people seemed to be celebrating, seemed to be excited about this strange and somewhat soulless experience known as modern air travel.

It was surreal. I'm not sure there's any other word to describe it. And amidst all the fanfare and flashing flat panel television screens, I saw an ad for the new People Mover that was evidently the next step in these magical LAX improvements. Coming soon, the ad said. Opening in 2023.

2023? Remind me not to go back to LAX until then.

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This post first appeared on Eric Lanke's blog, an association executive and author. You can follow him on Twitter @ericlanke or contact him at eric.lanke@gmail.com.

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