Twitter and Tear Gas

twitter and tear gasTwitter and Tear Gas: The Power and Fragility of Networked Protests, Zeynep Tufecki

Protest is the new brunch, here in Washington, DC. There’s plenty to protest, after all, and it’s easy to find one even for someone who wasn’t that involved before January 20, 2017.  A list of public events in Washington, DC will easily turn up half a dozen lunch time or after work protests for this week alone. The question that doesn’t always get answered, though, is what comes next.

For any engaged activists, Zeynep Tufecki’s book should be required reading. A Turkish national and long time activist and scholar–she’s been at encuentros with the Zapatistas and was part of the Battle of Seattle–Tufekci is broadly supportive of  left wing protests and uprisings, but wary of the new tools that we’re using. She celebrates how many people can be turned out for a march, or to show up in Gezi Park or Tahrir Square, or how activists can find each other, but is painfully aware of the limitations and new challenges these tools provide.

The primary limitation, as Tufecki, points out, is that 1) when activism is easier, it has less meaning–those of us who are activists know this already. A form e-mail has very little weight, since all politicians know it took two seconds to send. A call is better. A personal meeting is best. We’re seeing now an ease to turning out hundreds of people at a time that lessens the impact. 2) The work that went into organizing protests previously, the dozens of meetings, the hours of planning, the discussions, the time spent together, was valuable in and of itself in terms of building trust and building leaders. When we lose that, it makes it harder to move beyond the protest part of the movement.

Tufecki’s analogy here is how modern mountaineering equipment and oxygen tanks make it easier for a novice to climb Mt. Everest. More people than ever before can climb up the mountain, and it maintains impressive, even if less impressive than it was 70 years ago. But when a novice climbs, they’re less likely to be able to adapt or succeed if the run into trouble, even minor trouble that a more experienced mountain climber could overcome. Because someone with more experience and practice has developed the muscles and knowledge they need. Similarly, when a protest encounters a challenge or needs to enter its next phase, those organizing muscles are useful to adapt and move forward.

Twitter and Tear Gas is an incredibly insightful, and well researched, document of the new challenges that activists truly interested in change need to overcome. Tufecki celebrates some of the changes, including how much easier it is for activists to find each other, and the way that social media was able to break through some of the censorship that existed in middle Eastern and other countries. She’s very clear on the issues, though. One is that protest has an attraction in and of itself that brings people together, but it has limitations in moving things forward. There can only be sustained change if there is a goal and people know how they are going to achieve those goals. Instead, protests are attracting attendees who want change but don’t think that voting or participating in institutional options will ever change anything, a common thread among attendees at Occupy Wall Street and Tahrir Square, making it difficult to do anything besides protest. Additionally, protests that have sprung up suddenly with no central leadership or plan, which she refers to as “adhocracies” have the challenge of moving forward. She details how when the Turkish government wanted to negotiate with protestors at Gezi Park the movement couldn’t identify anyone, leading the Turkish government to invite people–meaning the government created the leaders, rather than the movement.

She is also very clear on the power of protests. They can bring additional attention to an issue, as happened in the Arab Spring. They can also introduce activists to one another. She cites a fascinating study showing that after the initial Tea Party protests that happened around the United States, locations that had heavy rain–which depressed protest attendance–saw less subsequent turnout from Republicans than areas that had good weather, which swung Republican in the next election to a greater degree. Tufecki points out, however, that there was a clear engagement with attendees after the protests. She cites another study showing that while Tea Party members may be uninformed about what policies would actually do, or the actual statistics on immigration, crime, and so forth, they were more educated than many career politicians on the intricacies of how legislation was made, when the votes were, who was on each committee, etc.

As shown in the above example, the limitations of networked protests are ones that can be overcome, with effort, by movements. More challenging are the direct negatives of social media. Having only one or two companies with such control over spreading information is a huge challenge, as we already know. Facebook’s “real name” policy, one enforced only when there is a complaint, means that anyone can be targeted and have to jump through hoops to prove their name. Even more important, it means that LGBT activists, activists in oppressive governments, and others can be outed placing their lives at real risk. Twitter has its own issues regarding harassment, as almost everyone knows. One tweet noticed by the wrong person results in death threats, rape threats, doxing, and threats to one’s family. Twitter is unwilling to step in and put up meaningful barriers, pushing many people off of the platform, and giving others pause before they are engaged in advocacy.

And, of course, the way that social media can be used to push false information. Twitter and Tear Gas came out in 2017, but was written in the preceding two years. Given that, it’s a bit squirm inducing to read about how Turkey, Tunisia, and even China have moved from straight censorship to instead working to muddy the waters, pushing their own versions of stories, questioning media leaders, and seeking to make it difficult to know what’s happening by producing hundreds of questionable news articles. And reading of how Russian troll armies spread disinformation about NATO ahead of Sweden’s NATO vote was enough to send chills down my spine. What was incredible here was learning how every thing that was done to undermine the US elections was well known and documented in other contexts even before 2016, and yet we fully exposed with no precautions, no challenges to the way Facebook did business, no, or minimal effort, to track down and close down Russian trolls and bots.

I would have liked a bit more from Tufecki in a few places. She is a student of activist movements and history, clearly learning from US movements as well as others, and given that I would have hoped for a bit more on how people have overcome such issues before. The US has faced threats to trust in our institutions before. We were lied into a war before. Radio changed the way we interacted with the world once again, giving people more access to the outside world but also quickly taken up by people like Father Coughlin spreading vile lies. Pamphleteers and snake oil salesman showed that not everyone could be believed. What changed? Did the fever break on its own, or were their concrete steps that helped? And in general I would have liked more suggestions for change. Her chapter on the challenges of Twitter seemed to boil down to, “It’s good and bad, it’s hard to know what to do.” A position with which I sympathize, but I also know there are many people thinking about how to overcome that challenge and it would have been helpful to have an overview of some of their thoughts.

Overall, though, I thought this was an incredibly useful and insightful book that should be spread far and wide. In an era where we have five calls, Facebook Town Hall, and dozens and dozens of organizations to send us action alerts, while at the same time a bill polling at 12% passes the House and is stopped by the Senate by only 1 vote, it feels as if we are more connected and more separated from our elected officials than ever before. Twitter and Tear Gas helps to identify the new challenges we face so that we can organize more effectively and start to move forward and make change. Read this book before your next brunch.

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The Constant Gardener

ConstantGardenerbookcoverThe Constant Gardener, John Le Carré

Oftentimes before I write one of these essays I look at other reviews of the book to help muddle through my own thoughts. Nothing helps me to sharpen and clarify my opinions after all as much as disagreeing with someone else. I look at reviews especially when it’s a) been a while since I finished the book and I want to refresh my memory and/or b) if it’s a book that came out more than a few years ago as I like to be reminded of the climate when it was released.

When reading reviews of The Constant Gardener I noticed two main things. Firstly, that every reviewer had to write about The Constant Gardener in relation to other books by John Le Carré. I haven’t read anything else by Le Carré–although I have two other books of his on my to-be-read shelves–so I’m afraid it will have to stand on its own for me. Secondly, that the reviewers all commented on this new type of book that Le Carré had struck upon, a novel that explored the wrong doings of corporations (as opposed to the cold war spy novels of previous years), and one that was meant to motivate people to action. The reviews all wonder whether this sort of intrigue, a person against a corporation, a book that was meant to anger us about an industry, could possibly take off. It’s so strange to hear now, when fighting against an evil corporation is the standard in so many novels and movies. I had no idea Le Carré was such a trend setter.
On to the book itself, read with none of that background knowledge, it was a very engaging read. Justin Quayle, the constant gardener of the title, is a quintessentially British character, quiet, gentlemanly, courteous, and content as a foreign service officer drifting along for his career. The kind of man who can be easily overlooked, with the best description being that his politeness is easily mistaken for weakness. A character I recognize as someone to be admired from many of the British mysteries and suspense novels I’ve read. His beautiful young wife, Tessa Quayle, who many suspected was having one or more affairs, is brutally murdered at the start of the book, leading Justin to search for the real reason she was killed, and carry on her work.

The book takes on, in a rather roundabout and fictional way, pharmaceutical companies, corruption with both donor nations and developing nations, and the use of donations and people in the developing world as guinea pigs for new drugs. This is what Tessa and Dr. Arnold Bluhm–who the rumor mill said she was sleeping with–had been tracking, with Tessa trying to find a way to bring attention to their bad works within the British government, naively insisting on working within the institutions.

And this was my biggest issue with the novel. Tessa is portrayed throughout as an activist, highly moral, tenacious, and brilliant (and rich and gorgeous and so on and so forth. She is the point of the whole novel and the plot point for Justin to start his part of the story, after all.) She is forward thinking encrypting her communications, sending additional letters to family for others to find, etc. And yet, the report that would expose these bad deeds, that Justin is trying to piece together, is never found. I just found it so difficult to believe that this brilliant lawyer, knowing that she’s fighting an amoral corporation with many resources and no scruples about silencing critics, wouldn’t have created a fail safe and sent the report off somewhere. Left a key for Justin to a safe deposit box? Mailed copies to her brother? Anything. It didn’t ring true to me. Apologies for nitpicking, but I’m afraid it’s what I do.

The second part that I thought didn’t quite work was this apparently brand new notion of a novel that would motivate people to future activism. Le Carré was obviously sincere about this, and wrote a follow up bit that’s in the book about how all of these pieces are true in their own way, and that these bad acts are happening around the world and primarily in Africa. However, the companies and occurrences were too generic in the book for me to feel that I could use them as a jumping off point, the activist groups fictionalized as well. There needed to be a bit more docu- to the -fiction for it to really work as the rallying call he intended.

As a book, though, I found it compelling-despite my issue with the MacGuffin at the center–and a suspenseful novel. Le Carré can craft a page turner, that is for sure, even if it’s a page turner far more subtle than other suspense or spy novels we might be used to. And I enjoyed the characters more than I thought. For anyone whose seen the movie, don’t let it discourage you. The relationships as written in the book made far more sense, Justin was more compelling, the various characters on the periphery were more rounded and intriguing, and overall I wanted to keep reading. Le Carré is not an optimistic man, I fear, and this book was no exception, and despite his novel decrying the neo-colonialism of capitalism and humanitarianism, there’s still more than a whiff of old colonial feeling in the book, leading to an air of sadness over the whole affair. It kept me thinking about the book well after I’d finished, though, which I always take as a good sign. I look forward to finishing the others on my to be read shelf and taking on some of his classics.

Strangers in a Strange Land

strangers in a strange land

Strangers in a Strange Land, Archbishop Charles Chaput

The problem with any critique that compares current society to past society, from an ethical and moral perspective, is that it is indisputable that most people are not only doing better but are treated far, far better today than they were even 30 or 40 years ago, let alone 60 years ago or more. This isn’t to say that there are not critiques to be made of modern society, but that critiques lose almost all meaning when they are meant to show how progressives, or anyone else, have ruined society compared to years ago, rather than addressing these complaints as unique problems of our own time.

Chaput’s book, Strangers in a Strange Land, is full of these sort of nostalgic complaints, and joins the rank of others, such as Rod Dreher’s The Benedict Option, and all of Fox news, in asserting that gay marriage is the final evidence that society and religious liberty are broken today in ways that they never have been before. This book doesn’t just assert that there are challenges in society, just as there have been in every generation. No, the issues, is that feminists, gay activists, and progressives pushing an expanding of respect to include LGBT individuals are destroying society, especially compared to how civics worked back at the founding of the country. And this attack on tradition—although he calls it religious liberty, ignoring the liberty of the United Church of Christ, Unitarians, the Evangelical Lutheran Church of America, Reform and Conservative Judaism, and others who allow for LGBT inclusion—is undermining our respect for one another and for the civic glue that holds the country together, threatening the democratic underpinnings of our society.

The problem, again, is that most categories of people have far more respect today than they did at the country’s founding—Catholics included! There is not only the obvious, such as that slavery does not exist today, although this should not be glossed over lightly. In almost every category outside of Protestant White Male, there is a level of respect, inclusion, and extension of humanity that didn’t exist before. It is only 40 years ago that in the US women couldn’t even have a credit card on their own. Religious minorities are more accepted.  It is only a few decades ago that many clubs would still not allow Jews, and in the 30s the German American Bund, a Nazi sympathizer group, had great support. John F. Kennedy may have won the presidency, but his Catholicism was a point of actual debate in the country. And, a category that is far too often overlooked, those with cognitive or physical disabilities are included in society now, deemed worthy of respect. And it is the forces of progressivism that have made that possible.

It is not so long ago that anyone with a mental challenge or deviance of any kind would have been condemned to a likely horrific institution, with no health or decency standards, subject to rampant abuse and forced sterilization. Those with physical deformities would be outcast, perhaps gawked at. The Americans With Disabilities Action was only passed in 1990. Providing ways for those with learning disabilities to attend school and participate in society has only happened within the last 20-30 years. In Strangers Chaput rails against the throwaway culture that encourages the abortion of a baby shown to have Down syndrome or other cognitive disabilities, which I agree is an ethical and moral outrage. But would anyone really argue that abandoning them to institutions was not throwing these people away? That there is not more respect and options for those with challenges today than a generation ago?

And instead of critiquing the attack on life represented by aborting a baby who would be a challenge in life on on its own, he wraps it into a wider critique of a progressive culture, ignoring the fact that the same progressive community that wants to see LGBT people extended rights and respect as full members of the human family and participants in society in many cases includes the same medical professionals and activists who fought for those with physical and mental disabilities.  It’s not that the progressive community has always showered itself in glory with people with disabilities (eugenics being the obvious, glaring example), or even that every aspect of the progressive community does so today. But in the last few decades extending respect and assistance to those in need, and extending the ethical concerns of society, has been a progressive pursuit.

Then, of course, there are the critiques of feminism, the assertion that somehow women are less respected due to contraception and pornography.* Plus an odd critique of an Obama era add showing how government would assist a single woman to get a college degree and a job that criticized the ad for saying a woman would then rely on government rather than a husband, rather than asserting that she should be doing such things on her own! He even includes a line about feminists fighting, “imagined boogeymen like patriarchy”, again ignoring that a short time ago a woman couldn’t by a car on her own. And until 1993, there were still states in the US where rape was legal within a marriage.

The suggestions that women are less respected now due to contraception are ridiculous and insulting. There is a reason women were the ones pushing for the legality of contraception, a reason women jumped at this opportunity—because they knew that controlling their own fertility was essential to controlling their own lives. And the Catholic Church acknowledges that healthy timing and spacing of children is important, or else natural family planning wouldn’t be permitted either (NFP). And his assertion, one that I’ve heard before, that anyone having sex while on contraception is destroying their experience somehow, that “contraceptive intimacy” is not intimacy is insulting. That “….their sexual contact is neither intimate nor fertile nor really mutual in any sense.” Now, listen, I actually don’t have a problem with church leaders making ethical or moral proclamations about married life, at least in the abstract, if they stick with ethical claims about contraception and reproduction. But it is simply ridiculous to assert that a priest has a better idea of what helps people be intimate and have a mutually respectful and happy marriage than the married couple themselves and there is a reason people continue to use contraception, including over 90% of Catholics. And that well over 80% of Catholics say that it shouldn’t be a moral issue. Make a better argument for natural family planning—the goal of which is to not be open to having kids at that time, by the way—don’t say that there’s no reason a married couple might want intimacy without a child *at that moment*.

This isn’t to say I disliked the book entirely. I actually really enjoyed some of the critiques of the breakdown of civics, and the importance of building a society together and respecting one another, which is part of what made some of the critiques of extending respect to LGBT individuals so jarring. I also think that Chaput does truly believe that Catholicism is meant, in part, to be part of respecting others, embracing people in the love of Jesus, which he highlights in the book. Again, though, this is part of what was surprising. I understand that people are called to different issues, but this book was written at the end of the 2016 election cycle, when Donald Trump had been calling Mexicans rapists, threatening a ban on Muslim refugees, and saying that he would murder the families of terrorist (all against Catholic teaching, by the way, with racism and murder of innocents in war being ‘intrinsic evils’), it seems odd to say that the biggest attack on Christian belief in the country is a loosening of sexual mores.

I think that Chaput is sincere in his faith, and that he does see the importance of respecting each individual. Again, many of his general statements about the importance of truly living out and embracing our faith, about the importance of a civic life, about the need for the Church to stand up for what is right and not reflexively support the state, I agree with. Some of his other criticisms of the tendency of people to go along, and not be honest with ourselves and our beliefs, and represent those to others, struck me as well—I underlined many passages in this book. And on a wider note, I greatly respect that he wants to engage in society, rather than retreating, and that he sees the essential nature of the Church being one of hope, love and joy rather than despair and anger, which I find many conservative leader retreating into. He shows an admirable willingness to engage those with whom he disagrees, to criticize hatred,  and to call out those on the right when necessary—his statement on Charlottesville was excellent. But I cannot agree with the underlying assumptions of his book, or that for the Church to be respected it means we cannot even allow the respect of those with a different belief that does not harm anyone other than possibly themselves.

What it comes down to is that I agree with a quote from Chaput, from page 210, that Christians need to love other persons as “living, unique, unrepeatable images of God’s own love, imbued with his dignity.” This is what we must try to live out in every part of our lives. And where that may challenge our moral theology, well, I defer to Jesus.

“‘Love the Lord your God with all your heart and with all your soul and with all your mind.’[c] 38 This is the first and greatest commandment. 39 And the second is like it: ‘Love your neighbor as yourself.’[d] 40 All the Law and the Prophets hang on these two commandments.”–Matthew 22:37-40

 

 

*As an aside, I would love to one day do a side by side comparison of current Catholic critique of pornography with second wave feminist critiques of pornography. My strong suspicion is that there would be a good deal of overlap.

One of Many Election Post-Mortems

I am in horror today, and like more than half of America I am grieving.  I had so much difficulty seeing my children this morning and wondering what kind of world I’m leaving them, so much trouble talking to the Muslim woman who watches my daughter, and her daughter, who had voted in her first election and been out organizing all week.  So much trouble just driving to work and seeing the news and listening to the radio and pretending that anything is okay.

And I am shocked.  Shocked because of how wrong all of the polls were, in ways no one saw, true.  But also shocked that anyone could have voted for Donald Trump.  Shocked that he could have made it this far.  And I am left wondering how this could happen.  Obviously we have a lot of outreach to do and a good long ways to grow.  But there’s a lot of blame to go around.

Last night I was watching CNN as the election returns came in.  And as it became clear what was happening, the anchors seemed in shock and as horrified as  those of us at home.  And of course they did, because they know what this means, and they know how dangerous Trump is.  But as I was watching, I was wondering, CNN, are you happy with the choices you’ve made?  Happy with the decision to hire people who are still on Trump’s payroll?  Happy with the decision to cover the story of State Department e-mail protocols as if it was the same as every single thing that Trump did?  Happy that you analyzed e-mail dumps from a hack by a foreign power–e-mail dumps that only showed us that Clinton was a politician involved in politics, but nevertheless “raised questions”?  Happy that you spent all of the primary and most of the general election airing Trump’s every utterance, giving him hundreds of hours of free airtime and providing him an unchallenged platform on your station?  Happy with continuing the long-standing practice of evaluating everything based on what it meant for the election rather than what it actually meant for policies and for people?  Because all of these decisions shaped this election and went into making last night’s result happen.

I don’t want to unduly pick on CNN here.  Yes, they made some of the most indefensible decisions, such as hiring Corey Lewandowski.  But I think Jake Tapper has done very good work in pushing Trump’s people, and we’ve all enjoyed Ana Navarro.  Their decisions, though, are similar to what other respected media giants such as NYT, Washington Post, MSNBC and others have made.  Unlimited coverage for Trump, only horse race coverage during the primary, pretending the e-mails are the same as anything else because of “balance” or hating Clinton or who even knows.  On Super Tuesday the major networks barely mentioned Clinton’s wins, and showed Trump’s entire acceptance speech for goodness sake.

During this election season we had at least 1000 articles on Trump’s supporters, and an equal number on Hillary Clinton’s enthusiasm problem.  Where were the articles on her supporters, on why so many people were supporting her, a chance for people to tell the story of why they were voting for Clinton?

When it came to free media of rallies and the like, there was no semblance of balance.  And yet for scandals, the media felt compelled to pretend that the candidates were alike.  For every horrible thing Trump did, the media covered the e-mails.  The articles always summarized the “scandal” by pointing nothing was actually wrong–but there were clouds.  And questions.  And shadows.  Leaving every voter with the impression that there was something wrong when there wasn’t.  Yes, there were articles on Trump’s Foundation, well researched articles on his taxes, but all the scandals together probably got as much focus as e-mails where, well, nothing was wrong, per se, but surely there were questions.

And in the meantime we had to treat everything Trump said as worthy of respect, and pretend that this was a normal race.  Remember when Clinton gave an incredibly well researched speech with loads of obvious examples about how Trump was getting support from the new racist and white supremacist movements?  And then Trump tweeted that Clinton was the real racist?  And then the media the next day played it off as Trump and Clinton were trading barbs?

Many journalists undoubtedly think that they did what they were supposed to do, researching Clinton and researching Trump.  But the truth is that they built up stories about nothing for Clinton into stories of potential scandal, and to voters created the impression that these candidates were equally corrupt and untrustworthy, when there was never a competition.  The pretended that calling Trump racist was just candidates trading barbs.  Pretended that calling the KKK deplorable was a gaffe, rather than digging in to the racism.

And at the tail end of the election, the media published and poured over private e-mails from a hacked server that had almost definitely been procured by a hostile foreign power, and decided to publish a Republican press release rather than waiting a half hour for clarification.

There are ten thousand things that went wrong here, and so many problems in our country that this election has shown.  But I certainly hope that the mainstream media, who, for all the discussion of new media still have a large part to play, are considering the criticism they received throughout a lot more seriously.  Because it is largely due to them that we will now see President Trump.

The Immortal Life of Henrietta Lacks

The Immorta Life of Henrietta LacksThe Immortal Life of Henrietta Lacks, Rebecca Skloot

The most affecting part of The Immortal Life of Henrietta Lacks is towards the end of the book, from chapter 32.  Throughout the book we are shown the emotional effect of Lacks’ death, and the fame of her cells, on her family.  After Lacks’ death her husband remarried to a woman who abused the children, and in particular the youngest son, Zakariyya (pronounced Zuh-CAR-ee-ah) is portrayed as full of anger towards the world, and in particular white people, Johns Hopkins, scientists, and everyone who he sees as having stolen his mother’s cells.

The author, Rebecca Skloot, takes Zakariyaa and Lacks’ daughter, Deborah, to the Johns Hopkins medical center to meet with a research, Christoph Lengauer, who has offered to show them their mother’s cells and some of the research that’s been done.  Throughout the chapter they see all the parts of the research lab, watch the cells divide through a microscope, and ask questions.  Most importantly, though, for the first time they are able to talk with a researcher about what’s been done with their mother’s cells, and have their anger and conflicted feelings be validated by someone from the scientific and research community.  At the end of the chapter, Lengauer gives them both his cell phone number and tells them to call any time with questions about their mother’s cells.

As we walked towards the elevator, Zakariyya reached up and touched Christoph on the back and said thank you.  Outside, he did the same to me, then turned to catch the bus home.

Deborah and I stood in silence, watching him walk away.  Then she put her arm around me and said, ”Girl, you just witnessed a miracle.

I think most people at this point know the basic outline of The Immortal Life of Henrietta Lacks.  It received an amazingly positive critical reception, was covered numerous times in the media, and stayed on the New York Times bestseller list for about a year and a half.  Henrietta Lacks, an African American woman, died of cervical cancer in 1951.  She was treated at Johns Hopkins medical center, and some of her cancer cells were collected while she was there, and without her and her family’s informed consent.  These cells, called HeLa as they were identified by her first and last name, became the first, and still the most productive, immortal cell line.  Because they are cloning themselves and identical, they have been used in what seems like almost all medical research over the last fifty years.  Despite this, her family hadn’t ever been told, had no say over what would be done with the cells, and received no monetary compensation.

On the surface, this is what Henrietta Lacks is about.  The complicated, muddy world of medical ethics, or what “informed consent” actually does, the history of medical advancements being made based on biological donations or participation in trials by poor, primarily black, individuals, throughout our nation’s history.  The story of Henrietta Lacks is a wonderful lens through which to examine these questions.  This is because, unlike, say, the Tuskegee Syphilis experiments the taking of and experimenting on Lacks’ cells didn’t involve any blatant wrong doing or clearly unethical action.  A few conspiracy theories to the contrary, it becomes fairly clear through Skloot’s research and reporting that no one actually did anything “wrong”, per se, in the Lacks’ case, and she wasn’t harmed by the experiments on her cell line after she passed.  It’s even more clear that there’s nothing being done wrong by the scientists currently performing research, although several of us might take pause at the thought that we can buy a person’s cells online, or that a cell line can be patented.  And it’s this murky world of ethics that the end of the book focuses on as well, looking at what “informed consent” actually means, and looking briefly at a man who sued after finding out his doctor was profiting off of his own cells.  The court ruled that was fine since the man who produced the cells had agreed to get rid of them as so much medical waste, and it was the doctor that had patented and started selling them.

This is a valuable conversation, and one that we’re still not really having, despite the popularity of this book.  Count me as one of the people who is extremely troubled by the idea of patenting life of any sort.  It makes me squirm.  Even if there is some sort of equity between the person who donated the cells and the doctors and researchers who profit, I still find the whole thing rather sordid.  However, I think this book goes beyond just the thought of medical ethics, and focuses on the real issue: making sure that we see each other as human, that we recognize what comes from other humans, that we are all treated as whole people.

It’s evident in the book, and from the scene I quoted at the beginning, that what’s most important to the Lackses isn’t just the money—although almost all of them are living in poverty and would certainly appreciate it—it’s the lack of recognition they feel for their mother, the lack of respect they’ve had from the scientific community, the lack of consulting with the family about anything that happens with their mother’s cells.  They are pained that scientists celebrate the HeLa cell line, but forget that it’s so named for a real, flesh-and-blood person, Henrietta Lacks.  One gets the sense that they would have been just as hurt to have some money thrown at them grudgingly with an expectation that then they would disappear as they are now.  What was far more valuable was having someone from Johns Hopkins talk to them and recognize them.

This speaks to a larger issue throughout our society, our forgetting that images, names, stories, research cells, memes, political footballs, etc. are attached to real people and the effect that making them famous in any way could have on them.  We often forget to recognize the humanity in others, those we interact with every day, those who have changed lives, even those who just turn into an internet meme, or, even worse, find themselves at the center of an internet firestorm over nothing.  We ignore the humans and families behind political stories and grieving parents find themselves or their deceased children the targets of social media attacks if they have dared to speak up, or just end up in the news.

Recently, there have been rules passed around medical research requiring informed consent, and also that any identifying information be stripped from cells or other medical “waste” that is used for research to preserve confidentiality and avoid future books like this one.  And to avoid lawsuits from people who want to be compensated for their cells.  Informed consent and confidentiality are good, and I’m glad that this book has brought many issues of medical research to people’s attention.  But even more than that I hope this book teaches us to recognize every person we interact with as a human, with a family deserving of respect.  That there is nothing more important than recognizing and preserving the dignity of every human being.