Amend your ASA/Sage author agreement!

open

This is a followup to a previous post, and contains some duplication.

I have spoken well of the policy that permits authors to post preprint versions of their papers before submitting them to journals of the American Sociological Association. That means you can get your work out more broadly while it’s going through the review process. The rule says:

ASA authors may post working versions of their papers on their personal web sites and non-peer-reviewed repositories. Such postings are not considered by ASA as previous publication.

The policy goes on to ask that authors modify their posted papers to acknowledge publication if they are subsequently published. That’s all reasonable. This is why SocArXiv and other services offer authors the opportunity to link their papers to the DOI (record locator) for the published version, should it become available. This allows citation aggregators such as Google Scholar to link the records.

The problem

Unfortunately, the good part of this policy is undermined by the ASA / Sage author agreement that authors sign when their paper is accepted. It transfers the copyright of the paper to ASA, and sets conditions under which authors can distribute the paper in the future. The key passage here is this:

1. Subject to the conditions in this paragraph, without further permission each Contributor may …

  • At any time, circulate or post on any repository or website, the version of the Contribution that Contributors submitted to the Journal (i.e. the version before peer-review) or an abstract of the Contribution.
  • No sooner than 12 months after initial publication, post on any non-commercial repository or website the version of the Contribution that was accepted for publication.

This is not good. It means that if you post a paper publicly, e.g., on SocArXiv, and then submit it to ASA, you can’t update it to the revised version as your paper moves through the process. Only 12 months after ASA publishes it can you update the preprint version to match the version that the journal approved.

This policy, if followed, would produce multiple bad outcomes.

One scenario is that people post papers publicly, and submit them to ASA journals for review. Over the course of the next year or so, the paper is substantially revised and eventually published, but the preprint version is not updated until a full year after that, often two years after the initial submission. That means readers don’t get to see the improved version, and authors have to live with people reading and sharing their unimproved work. This discourages people from sharing their papers in the first place.

In the other scenario, people update their preprints as the paper goes through the revision process, so they and their readers get the benefit of access to the latest work. However, when the paper is accepted authors are expected to remove from public view that revised paper, and only share the pre-review version. If this were feasible, it would be terrible for science and the public interest, as well as the author’s career interests. Of course, this isn’t really feasible — you can’t unring the bell of internet distribution (SocArXiv and other preprint services do not allow removing papers, which would corrupt the scholarly record.) This would also discourage people from sharing their papers in the first place.

The individual solution

Fortunately, you are a volitional agent in a free market information ecosystem, and you don’t have to just sign whatever PDF some corporate conglomerate puts in front of you. My suggestion is that you amend the agreement before you sign it. After receiving your acceptance, when the managing editor sends you the author agreement for your signature, politely notify the editor that you will be happy to sign the agreement with a minor amendment. Then strike through the offending text and add the amendment. I recommend the following text:

  • No sooner than 12 months after initial publication, post on any non-commercial repository or website the version of the Contribution that was accepted for publication.
  • At any time, post to SocArXiv (a non-commercial, open-access repository) the version of the Contribution that was accepted for publication, with a DOI link and bibliographic reference to the published Contribution.

Then sign the agreement and return it. Here’s a visual depiction of the amendment:

sage amendment

Don’t panic! Yes, this publication may be the last thing standing between you and tenure or a better job. But the journal will not cancel your publication when you do this. The very worst thing that will happen is they will say “No!” Then you can roll over and accept the original agreement. (After the dust settles, I’d love it if you let me know this happened.) People amend these agreements all the time. Give it a try!

Here’s the relevant passage in “Alice’s Restaurant” (@ 14:32)

And the only reason I’m singing you this song now is cause you may know somebody in a similar situation, or you may be in a similar situation,

And if you’re in a situation like that there’s only one thing you can do and that’s walk into The shrink wherever you are, just walk in say “Shrink, You can get anything you want, at Alice’s restaurant.” And walk out.

You know, if one person, just one person does it they may think he’s really sick and they won’t take him. And if two people, two people do it, in harmony – they may think they’re both faggots and they won’t take either of them. And three people do it, three, can you imagine, three people walking in singing a bar of Alice’s Restaurant and walking out. They may think it’s an organization. And can you, can you imagine fifty people a day, I said fifty people a day walking in singin a bar of Alice’s Restaurant and walking out.

And friends they may think it’s a movement And that’s what it is, the Alice’s Restaurant Anti-Massacree Movement, and all you got to do to join is sing it the next time it comes around on the guitar. With feeling.

Fix the policy

So, what possible reason can there be for this policy? It is clearly intended to punish the public in order to buttress the revenue stream of Sage, which returns some of its profits to ASA, at the expense of our libraries, which pay for subscriptions to ASA journals.

I assume this policy is never enforced, as I’ve never heard of it, but I don’t know that for a fact. It’s also possible that whoever wrote the Publications policy I linked above didn’t realize that it contradicted the Sage author agreement, which basically no one reads. I also assume that such a policy does not in fact have any effect on Sage’s profits, or the profits that it kick backs to ASA. So it’s probably useless, but if it has any effects at all they’re bad, by discouraging people from distributing their work. ASA should change this author agreement.

I just got elected to the ASA Publications Committee, so I will add making this change to my platform, which I outlined here. I’m not optimistic about making policy changes at ASA in the current environment, but I am sure that the more people who join in the individual efforts, the greater our chances will be.

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Michael Kimmel’s American Sociological Association Award

UPDATE: I am disappointed to report that the American Sociological Association did not follow this advice, and announced Kimmel as the winner of this award at their annual meeting award ceremony — while falsely claiming that he was “unable” to be there.

How the American Sociological Association can stop Michael Kimmel from winning the Jessie Bernard Award.

The ASA meetings are happening now in Philadelphia, and the association is confronting the case of Kimmel, a famous senior sociologist who specializes in men and masculinity studies from a feminist perspective. He was named as the winner of the association’s Jessie Bernard Award, which recognizes feminist sociologists. After the award was announced, but before it was formally given to him (which was to happen at the conference), the Chronicle of Higher Education (paywalledbootlegged) reported that a former student accused him of sexual misconduct, and a senior sociologist affirmed the existence of rumors about a long history of sexual misconduct, in particular unwanted advances and demeaning comments toward women. Another former student, Bethany Coston, accused Kimmel of sexism and abusing students who worked for him. Kimmel told the Chronicle he would “delay” accepted the award to give people time to file complaints against him.

ASA has no authority over Kimmel. You don’t need to be a member of ASA to practice sociology. All the association can do is revoke people’s membership, although doing so publicly would presumably have damaging reputation effects. To do that, ASA would need to do an investigation, and that takes time (not a time specified by Kimmel, but time nonetheless).

However, because the award has not yet been awarded, so to speak, it would be entirely appropriate for the award committee to reconvene and continue consideration of the award in light of the new information that they have. This does not require a full investigation, because it is action limited to the award, which has not yet been formally bestowed. It doesn’t require action by the association’s top leadership. If committee decides they no longer believe he should win the award — which I believe is the correct decision — then he doesn’t get it. The leadership only has to acknowledge the decision. That’s my suggestion.

The very idea of a man winning a feminism award, over the objections of the feminists in the association, and maybe over the objections of the award committee members themselves, while he is under investigation for sexual harassment and other abuse, is intolerable for the association. Reconvening the committee solves the immediate crisis, and allows the association to pursue an ethics case on its own time.

Some people will object to this action because they want more procedural fairness. But an award is a privilege, not a right. Losing an award is not a death sentence, it’s not career-ending. It’s not even job-ending. It’s not an overreaction. It’s a prudent response to the emergence of credible damaging information. The association should err on the side of not giving a major award, which is totally discretionary, to a person under this major cloud. If it all blows over and turns out to be a big misunderstanding, give it to him later.

If the alternative is between doing nothing, or next to nothing, even for six months — and the fallout from that — versus the decision to not award the award, which some people may perceive as unfair, the choice is clear. You can’t give the award under these conditions, and there is no reason to drag that decision out. The MeToo experience has shown that swift institutional responses are considered prudent and reasonable, while dallying and equivocating is harshly punished by public opinion.

To respect the sentiments of the membership, and to protect the association from well-deserved humiliation, ASA has to find a way not to give this award to Michael Kimmel, and the award committee is the appropriate body to make that decision.

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Visualizing family modernization, 1900-2016

After this post about small multiple graphs, and partly inspired by two news reports I was interviewed for — this Salt Lake Tribune story about teen marriage, and this New York Times report mapping age at first birth — I made some historical data figures.

These visualizations use decennial census data from 1900 to 1990, and then American Community Survey data for 2001, 2010, and 2016; all data from IPUMS.org. (I didn’t use the 2000 Census because marital status is messed up in that data, with a lot of people who should be never married coded as married, spouse absent; 2001 ACS gets it done.)

An important, simple way of illustrating the myth-making around the 1950s is with marriage age. Contrary to the myth that the 1950s was “traditional,” a long data series show the period to be unique. The two trends here, teen marriage and divorce, both show the modernization of family life, with increasing individual self-determination and less restricted family choices for women.

First, I show the proportion of teenage women married in each state, for each decade from 1900 to 2016. The measure I used for this is the proportion of 19- and 20-year-olds who have ever been married (that is, including those married, divorced, and widowed). It’s impossible to tell exactly how many people were married before their 20th birthday, which would be a technical definition of teen marriage, but the average of 19 and 20 should do it, since it includes some people are on the first day of their 19th year, and some people are on the last day of their 20th, for an average close to exact age 20.

I start with a small multiple graph of the trend on this measure in every state (click all figures to enlarge). Here the states are ordered by the level of teen marriage in 2016, from Maine lowest (<1%) to Utah (14%):

teen marriage 1900-2016

This is useful for seeing that the basic pattern is universal: starting the century lower and rising to a peak in 1960, then declining steeply to the present. But that similarity, and smaller range in the latest data, make it hard to see the large relative differences across states now. Here are the 2016 levels, showing those disparities clearly:

teen marriage states 2016.xlsx

Neither the small multiples nor the bars help you see the regional patterns and variations. So here’s an animated map that shows both the scale of change and the pattern of variation.

teen-marriage-1900-2016

This makes clear the stark South/non-South divide, and how the Northeast led the decline in early marriage. Also, you can see that Utah, which is such a standout now, did not have historically high teen marriage levels, the state just hasn’t matched the decline seen nationally. Their premodernism emerged only in relief.

Divorce

Here I again used a prevalence measure. This is just the number of people whose marital status is divorced, divided by the number of married people (including separated and divorced). It’s a little better than just the percentage divorced in the population, because it’s at least scaled by marriage prevalence. But it doesn’t count divorces happening, and it doesn’t count people who divorced and then remarried (so it will under-represent divorce to the extent that people remarry). Also, if divorced people die younger than married people, it could be messed up at older ages. Anyway, it’s the best thing I could think of for divorce rates by state all the way back to 1900.

So, here’s the small multiple graph, showing the trend in divorce prevalence for all states from 1900 to 2016:

div-mar-1900-2016

That looks like impressive uniformity: gradual increase until 1970, then a steep upward turn to the present. These are again ordered by the 2016 value, from Utah at less than 20% to New Mexico at more than 30% — smaller variation than we saw in teen marriage. That steep increase looks dramatic in the animated map, which also reveals the regional patterns:

divorce-1900-2016

Technique

The strategy for both trends is to download microdata samples from all years, then collapse the files down to state averages by decade. The linear figures are Stata scatter plots by state. The animated maps use maptile in Stata (by Michael Stepner) to make separate image files for each map, which I then imported into Photoshop to make the animations (following this tutorial).

The downloaded data, codebooks, Stata code, and images, are all available in an Open Science Framework project here. Feel free to adapt and use. Happy to hear suggestions and alternative techniques in the comments.

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Legal risks in reporting on academic sexual harassment

gossip

Gossip, according to Google Images

This is on the nuts and bolts of reporting sexual harassment.

Last fall my colleague Liana Sayer and I offered to help people report on sexual harassment in academic sociology (other posts on this: #MeToo). Although we have corresponded with a number of people, we have yet to make any public reports. One reason for that is legal risk.

The first advice I got from a number of people was to get a lawyer, and to get libel insurance. I did both of those things (libel turns out to be a kind of personal injury, like hitting someone in your car, so you can get covered for it under an umbrella policy).

After attending a media law conference (long story), and having gathered enough evidence to consider moving ahead with publication in one case, I spoke to several lawyers, and eventually retained Constance Pendleton, a media law expert and partner at Davis Wright Tremain. Here is some of what I learned from speaking with her.

First, if the case involves harassment within one workplace (school), it may be better to go through the official reporting procedure rather than making a public case, at least from the perspective of protecting the accuser. This involves lawyers and documents, which is good. However, for reasons I mentioned here, that often doesn’t work. And that process often ends with a promise of confidentiality that shields the harasser from public exposure (a key institutional goal of many university sexual harassment officers).

Second, the risk of getting sued as an individual is high. We don’t have a lot of experience in the current context with lawsuits against accusers, but the cases that have come forward have often involved major investigations by big organizations, not individuals publishing accusations on their blogs. So it’s hard to know how they will play. However,  even the cost of “easily” winning a case is likely to be a lot, something in five figures. And in the process, the accuser you are trying to protect could be forced to testify, or at least produce an affidavit, even if you have kept them anonymous in the story. Truth is a defense against libel, but if your true statement is “someone told me this,” you can still be found responsible if you can’t prove that what the person told you is true, or if it can be shown you acted maliciously in reporting it.

In the case of being sued, the things you need are the things a good journalist would want in reporting such a story, such as original documents, contemporaneous records, witnesses, and so on. There is a reason for that: journalists who report this stuff are heading off such lawsuits themselves. But I didn’t fully appreciate some key differences between a citizen journalist and a real news organization. These include the reputation of the news organization, which shields them (practically if not legally) from charges of acting maliciously. Also, they have lawyers already, so it doesn’t cost them as much to defend cases. And they have an interest in defending their reputation, so everyone knows they will fight. Finally, there are some legal protections for revealing information if you do it in the public interest, and that’s an easier case for news organizations to make. (This is my shallow, lay understanding of the situation, not legal advice).

Regardless of my thoughts on procedural fairness, which is hotly debated, these are reasons why I wouldn’t report on rumors alone, or report a case where I didn’t know the accuser’s identity and had no way of verifying the supporting information.

News reality

Given all this, The best thing might be for a news organization to report the story, rather than reporting it independently. I haven’t ruled out the latter course, but it’s much riskier. (And there may be hybrid solutions, such as writing a reported piece as a freelancer for a news organization.) Unfortunately, or maybe fortunately, news organizations that are interested in reporting on sexual harassment are getting bombarded with cases to report. They have to choose selectively from among these cases, and the variables involved are beyond my control.

In the case of Michael Kimmel, for example, reported by the Chronicle of Higher Education (paywalledbootlegged), the story includes one accuser who requested anonymity, and one senior sociologist who affirms the existence of rumors, and the charge is unwanted advances and demeaning comments. In this environment, that would not normally be enough to warrant a news story by a major publication, naming the accused. Not very much evidence and not such an egregious case (no reported threats, quid pro quo, or violence). That’s not an excuse, that’s a fact of the media landscape. The difference here is Kimmel is famous, and that he is “delaying” receiving a major award (plus it’s an award for being a feminist). If you brought the same facts and evidence to a news organization, but about a non-famous senior sociologist, you are unlikely to make it past editorial triage.

In summary, the very cases that I most want to expose — the common harassment that occurs between non-famous people all the time in academia — are difficult to work with. Risky for the citizen journalist, but maybe not important enough to jump the line at major news organizations. That said, I still favor public exposure as an approach in this environment, where policies remain weak and formal proceedings are unlikely to produce satisfactory results — but harassers and their employers are on the defensive and much of the public is watching and willing to get involved. And I still want to help. But it’s harder than I thought it would be. Live and learn.

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Are middle children going extinct?

In The Cut, Adam Sternbergh has a piece called, “The Extinction of the Middle Child They’re becoming an American rarity, just when America could use them the most.”

This is good for me to read, because I’ve been asked to include more material about sibling relationships in the next edition of my textbook, The Family, and it’s not my expertise. Thinking about sibling relationships is good, but the demography here is off. Sternberg writes:

According to a study by the Pew Research Center in 1976, “the average mother at the end of her childbearing years had given birth to more than three children.” Read that again: In the ’70s, four kids (or more) was the most common family unit. Back then, 40 percent of mothers between 40 and 44 had four or more children. Twenty-five percent had three kids; 24 percent had two; and 11 percent had one. Today, those numbers have essentially reversed. Nearly two-thirds of women with children now have two or one — i.e., an oldest, a youngest, but no middle.

It is true there are a lot fewer U.S. families with more than two children today than there were in 1976. However, by my reckoning (see below), in the most recent data (2016), 38 percent of mothers age 40-44 who have had any children have had three or more. So, there’s a middle child in more than a third of families. And, crucially, that number hasn’t dropped in the last 25 years. I’ll explain.

The best regular national survey for this is the Current Population Survey’s June Fertility Supplement, which is administered to a national sample by the Census Bureau more or less every two years. They ask women, “Altogether how many children have you ever given birth to?” The traditional way to measure total number of children born for a cohort of women is to take the average of that number for women who are ages 40-44. (I would rather do it at ages 45-49, but they didn’t always ask it for women over 44.)

This is what you get for the surveys from 1976 to 2016 (remember these are the years the women reached the end of their childbearing years).

birth order historyh.xlsx

You can see how it’s a little tricky. First, the biggest changes were over by the 1990s, when the last of the Baby Boom parents reached their forties (their first kids were born 25 years earlier). The biggest changes after that were in the number of women having no children, which rose until 2006 but then fell, possibly as access to fertility treatments improved. (Note in all this we’re calling all the children one woman has a “family,” but really it’s a sibling set; some will be living with other people and some will have died, so it’s not a measure of family life in the household sense of family. And it’s all based on children women have, so if there are different fathers in these families we wouldn’t know it, and if these children have half-siblings with a different mother we wouldn’t know it, but that’s the way it goes.)

It’s hard to see what this means for the prevalence of middle children in the country, because the no-children women aren’t relevant. So if your question is, “what proportion of families with children have any middle children?” you would want to do it like this, which excludes the childfree women, and combines all those with three or more:

birth order historyh.xlsx

This shows the big drop in middle-child families that Sternbergh started with, but it puts it in perspective: the change was over by the 1990s, and since then it’s been basically flat at 35+ percent. So, things have changed a lot from the days of the Baby Boom, but the same article could have been written, demographically speaking, in 1992. (Note that the drop in total fertility rate since 2008 [see this] hasn’t yet shown up in completed fertility since it’s among younger women.)

It’s not clear whether the unit of analysis should be the family or the child, however. This says 38 percent of women produce middle-child families. But how many children have the experience of being a middle child (defined as a child with at least one older and one younger sibling)? That might make more sense if you’re interested, as Sternbergh is, in the effect of middle children on the culture. So just multiplying out the number of children per woman, and counting the number of middle children as the total minus two for all sibships of three or more (I think I did it right), you get this:

birth order historyh.xlsx

(Again, this assumes no one died before their mother turned 44, which did change over this period, especially as violent crime rates among young men fell. You could do something fancy to estimate that.)

So, it looks to me that, for the last 25 years, about 20-25 percent of children have been middle children.

On the other hand, looking in the longer run — much further back than Sternbergh’s starting point of 1976 — it’s clear that the proportion of children growing up as middle children has declined drastically. One quick and dirty way to show that is in children’s living arrangements. The final figure uses Census data (decennial till 2000, then American Community Survey) to show how many children are living as the only child, one of two, a middle child, or as the oldest/youngest in a three-plus family. This is messy because it’s just whoever is living together at the moment. So this is answering a question more like, “what proportion of children at any given time are living with an older and a younger sibling?” Here’s the trend:

ceb4.jpg

(Note that, thanks to IPUMS.org coding, this does count people as having older siblings if the sibling is older than 18, as long as they’re living in the household. But I’m only including kids living in the household of at least one parent.)

Wow! In 1850 half of all U.S. children had an older and a younger sibling in the household with them. Now it’s below 20 percent. Still no drop since 1990, but the long-term change is impressive. So if all that personality stuff is true, then that’s a big difference between the olden days and nowadays. Definitely going to put this in the book.

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The Death of Truth rings true

real enemy tweet

Michiko Kakutani’s book, The Death of Truth: Notes on Falsehood in the Age of Trump, is the second-best Trump book I’ve read, second to Ta-Nehisi Coates’s We Were Eight Years in Power, more trenchant than Jonathan Weisman’s (((Semitism))): Being Jewish in the Age of Trump, and infinitely less completely wrong than Jonah Goldberg’s Suicide of the West: How the Rebirth of Tribalism, Populism, Nationalism, and Identity Politics is Destroying American Democracy (review essay). Those are the only ones I’ve read (open to suggestions).

Kakutani is a great writer, and this little book of 11 chapters in 170 small pages flies by. Since she left the New York Times, where she was book critic for many years, her Twitter feed has been a chronology of political crisis and social decay under Trump; reading it all together induces anxiety at the pace and scale of the descent, but also, surprisingly, some optimism that the situation remains decipherable with the tools of intellectual incision that Kakutani wields so well. With lots of good reviews out there, I’ll just briefly point out some things I appreciated.

Kakutani does the disturbing relevant history without histrionics. So there’s Hannah Arendt and Margaret Atwood, Adolf Hitler and Richard Hofstadter, George Orwell and Aldus Huxley, but not with facile linkages and great leaps. Also, she delves into postmodernism and its influences, but doesn’t simplistically blame postmodernism for creating the “post-truth” world (which rightfully concerns Andrew Perrin); rather she acknowledges the cynical uses to which its language may be put, including among some of its proponents, without the casual lumping of Foucault, Baudrillard, Derrida, and “multiculturalism” or “relativism,” etc., that you see so often. (One thing you know about Kakutani is that she reads a lot.) Although leftist anti-science attitudes play a role in her story (along with anti-institutionalism generally, anti-vaxxers, and so on), she has no interest in the false equivalency that, for example, blames all kinds of identity politics for injecting subjectivism into politics (the way Goldberg does so absurdly), or puts campus no-platforming on the same plane as the Iraq war.

This is an early first pass at a history of the moment, and Kakutani’s wide reading of relevant history connects tightly with the today’s news from Putin’s Russia to Wikileaks, fake news and Cambridge Analytica, to the “culture wars” debates, the “me generation” and today’s information silos, to political polarization, and the siege of journalism. You may as well read it in one sitting.

One good example: In my essay on Goldberg (now updated) I noted that he falsely described Lee Atwater’s maxim, “perception is reality” as “a cliché of the left.” I was glad to see Kakutani bring that up, in the proper context, because it is a moment that still matters. The contrast between their descriptions is telling, so I’ll lay it down here.

Goldberg writes:

“It is a cliché of the left to say that, ‘perception is reality.’ Well, the perceived reality for millions of white, Christian Americans is that their institutional shelters, personal and national, are being razed one by one. They do not like the alternatives they are being offered. Some fraction may indeed be racists, homophobes, or Islamaphobes, but most simply don’t like what they are being offered because they do not know it or because they do know it but prefer what they perceive to be theirs. And yet people like Sanders insist that resistance to their program is not just wrong but evil. The grave danger, already materializing, is that whites and Christians respond to this bigotry and create their own tribal identity politics.”

Goldberg falsely attributes the “perception is reality” approach to the left, then blames the left for making whites into racists. (With anti-Trumpists like these progressives don’t need enemies.) An accurate reading of that history in its proper context links today’s “perceived reality” to Atwater and the GOP itself, to decades of racist propaganda which the GOP generated and then gleefully weaponized. Here’s Kakutani:

“When the Republican strategist Lee Atwater observed in the 1980s that ‘perception is reality,’ he was bluntly articulating an insight about human psychology that Homer well knew when he immortalized Odysseus as a wily trickster, adept at deception and disguise. But Atwater’s cold-blooded use of that precept in using wedge issues to advance the GOP’s southern strategy – and to create the infamous Willie Horton ad in the 1988 presidential campaign – injected mainstream American politics with an alarming strain of win-at-all-costs Machiavellianism using mass media as a delivery system.” (p. 79)

My historical quibble is in the brief handling of China, where Kakutani includes Mao along with Hitler in the Orwell section on the co-optation of language. The Hitler material is excellent, and ties in well with Putin and then Trump’s big lies. But Mao’s “plan of linguistic engineering” does not fit that pattern. China was mostly illiterate, there was no mass media, and the state that was so forcefully imposing fixed terms and meanings, with simple slogans, was also expanding basic education to hundreds of millions of people, and literally reformed the language to make it more accessible, a change that still pays dividends. No need to spare China the criticism, but the early socialist years doesn’t belong in the category as advanced capitalist countries using the tools of fascism against their own democracies.

How bad is it? If Brave New World was warning us about capitalism, and 1984 was warning us about Soviet communism, as Kakutani has it, then it’s ironic that we’re now speeding toward a 1984 scenario even as the capitalist Russian kleptocracy literally parades around the White House (details on Putin’s upcoming visit to be determined). So, it’s bad. (Her conclusion, that only journalism and education can save us, is mercifully brief.) Every week is a crazy unprecedented crisis. Kakutani’s ability to get it down to an organized, linear narrative, with carefully chosen, relevant facts, makes The Death of Truth bracing and clarifying, and well worth a read.

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On my 10 year cancerversary, medical assistance for migrants

msfmigrants

From the Doctors Without Borders report (see below)

Update: I’m delighted and gratified that we met the donation goal described below. Thank you.

It snuck up on me again, the anniversary of my cancer experience, which came and went, more or less, in 2008, ten years ago. Last year I wrote about the experience a little:

There is a reasonable chance I’d still be alive today if we had never biopsied the swollen lymph node in my thigh, but that’s hard to say, too. Median survival from diagnosis is supposed to be 10 years, but I had a good case (a rare stage I), and with all the great new treatments coming online the confidence in that estimate is fuzzy. Anyway, since the cancer was never identified anywhere else in my body, the treatment was just removing the lymph node and a little radiation (18 visits to the radiation place, a couple of tattoos for aiming the beams, all in the summer with no work days off). We have no way (with current technology) to tell if I still “have” it or whether it will come “back,” so I can’t yet say technology saved my life from this one (though if I’m lucky enough to die from something else — and only then — feel free to call me a cancer “survivor”).

It turns out that all this life saving also bequeaths a profound uncertainty, which leaves one with an uneasy feeling and a craving for antianxiety medication. I guess you have to learn to love the uncertainty, or die trying.

Unlike the anxiety I have now, the fear and sadness I felt that summer were almost overwhelming. Today, 10 years later, with no detectable disease (not that I’m looking), I am thinking of the millions of people who have no access to the kind of medical care I had, who face similar or worse medical conditions in infinitely worse social conditions.

With so much energy in the US being diverted to our political crisis, for good reason, I want to pause for some humanitarian assistance abroad. Doctors Without Borders is a great organization doing vital work around the world. This year I am honoring their efforts to provide medical assistance to migrants fleeing violence and instability in Central America (here’s a report on the conditions there, and their work.).

I will match contributions to Doctors Without Borders up to $1000 for this campaign (plus the $80 or so GoFundMe will charge to collect it). It’s a small token of appreciation for my good fortune.

Here’s the GoFundMe link: Emergency Global Healthcare. I’ll make my contribution directly to Doctors Without Borders after it reaches $1000 or stops growing. Thank you for considering it.

And below is what I wrote on the five-year anniversary.

CportraitofP

That summer, when she was four, my daughter made this picture of me.


My 5-year cancerversary

I didn’t even register it right away. Five years ago this Memorial Day I got my diagnosis of follicular lymphoma, a form of non-Hodgkin’s lymphoma. It was late on the Friday afternoon when the surgeon called with the biopsy results. He never said the word “cancer,” but recommended I see an oncologist. He was a very nice guy, and told me I was going to live to be an old man. Within 15 minutes I had read that follicular lymphoma is usually incurable. (The UpToDate database I used now puts it this way: “most cases of follicular lymphoma are not curable with currently available therapies.”) It was a long long weekend.

Usually follicular lymphoma – a blood cancer – is advanced before it’s first discovered. In the next few weeks, one oncologist told me the median survival was between 10 and 20 years. I was 40 with a wife and 4-year-old daughter. I asked her why she was an oncologist. She said she was interested in end-of-life issues. Also, the nicest people get cancer.

Eventually we determined that I had what apparently was a rare case of Stage I, which may be curable. I had 18 days of painless radiation and didn’t (physically) miss a day of work. Lucky is a funny word for this.

Five years later I don’t have an oncologist anymore. It’s the first line on my medical chart but not a to-do list item. When we moved away, my Bayesian-minded oncologist wrote in his farewell note, using his best handwriting: “Your chance for cure is reasonable: pre-test probability is low. Early detection is not helpful. If you get an enlarged lymph node, get biopsied.” Maybe that’s oncology speak for: “Relax, good luck!”

pretest-probability-is-low

Anyway, there were lots of people I never told, including the chair of my department and some good friends and colleagues. Maybe that’s because it went from incurable (yikes, too much information) to possibly-cured (so stop complaining already) so quickly – before the start of the new semester – so I didn’t know how to bring it up or what to say.

For most people with this disease, the story is different. Thankfully, we’ve had a revolution in lymphoma treatment, and it’s usually a very long story. Most people live many years, and I’m told the new treatments usually aren’t that bad. (Easy for me to say.) Chance of surviving (that is, dying from something else) is pretty good. Experts debate whether the word “cure” should be used more.

Meanwhile, now there are two kinds of people in the world: people with a better prognosis, and people with a worse prognosis. Of course that’s always been true. But this experience sometimes makes me dwell on that, which increases my tendency to draw a sharp resentment/sympathy line according to this criterion. That isn’t healthy because it obscures the more important bases upon which to relentlessly judge people and compare myself to them.

seesawline

I’m writing this because I remembered how lonely and scared I felt back then – when I didn’t even know where on the scale to put myself. Nothing aggravates the modern identity like incalculable risk. Fortunately, I had the greatest family and friend support – and medical care – anyone could ask for. Life got back to normal. We adopted another daughter. There are other risks to worry about.

But I’m thinking that somewhere someone with no idea what to do next is getting news like I did and Googling “follicular lymphoma.” If that’s someone you know, or it is you, maybe it will help to know about one more person who’s still living about as normal a life as I was before. Feel free to drop me a note.

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