Category Archives: Thoughts

Pandemic Doesn’t Mean Panic. It Means Be SSMART

Pandemic Doesn't Mean Panic. It Means Be SSMART!
Pandemic doesn’t mean panic. It means be SSMART.”
Find copies of the poster for printing and sharing here.

This started with a Facebook post made during an online meeting last week. I’ve been really, truly, deeply concerned (read “alarmed”) by much of the panic and fear that is surrounding me on social media. I’m seeing fear-focused messages create situations that cause harm to others, and which can potentially cause harm to yourself. There are a lot of blogposts I want to be writing related to this, but I’m going to start here, with that original Facebook post:

Pandemic Doesn't Mean Panic - Original
Pandemic doesn’t mean panic. It Means Be SSMART!

What is being smart, in this context? I’m giving these mental hooks as places to start:
SSMART = Sanitary, Social Distance, Methodical, Aware, Responsible, Thoughtful.

Let’s start with a plain language version of what those might mean, and then do a deeper dive. The following text is copied from the image at the head of the post, for those working from a screenreader.

SSMART (Plain Language Version)

SANITARY

East or West, SOAP is best! What soap? Any soap you like. If you can’t get soap, then high-alcohol hand sanitizer (>60%) or bleach wipes will do. It’s especially important to wash hands after visiting the bathroom.

SOCIAL DISTANCE

The elbow bump is SO last month! These days social distance means 6-10 feet, or 2-3 yards or meters. If you can reach out and touch fingertips? Yeah, that’s too close. Back up a bit, friend.

METHODICAL

Just like we do our laundry regularly, making hand-washing and social distancing a habit is one of the best ways to keep you and your loved ones safe.

AWARE

If you are feeling good, sure you can go for a walk. Just remember social distance, walk in nature not around people! And look out for those people who aren’t watching where they are (or their dogs).

RESPONSIBLE

Parents take care of children. Grown-up children take care of their parents. Friends take care of friends. We all watch out for each other. This isn’t about me, or you, it’s about all of us. We all know someone who is at risk, probably someone we love. Right now, each time we wash our hands or skip a party, it’s about keeping others safe.

THOUGHTFUL

Helping others stay calm can help us stay calm, too. Checking the source of that news story or web site might make you wonder if it’s actually true. If we talk a lot about how scared we are, we might end up scaring other people around us even more. Who’s listening to what we say? What do we want them to hear? Does what we say help them, too, or make things worse? Stop. Think first. Then share.

The Deep Dive — More Thoughts on These

More Thoughts on SANITARY

All the fuss about hand sanitizer? Yeah. No. Soap works better. Soap is like a grenade for the coronavirus, just destroys it. And people who are cleaning their home personal space to an extraordinary degree? I have nothing against doing this, as long as you recognize that this is largely a way to comfort yourself, and probably not terribly practical for actually managing your risk of catching the virus. That is, of course, unless you have someone in your home who is either at high risk or ill, and you are trying to manage their germs or their exposure to germs. For my home, it is filled with my usual germs, and while, yes, it needs a good cleaning, coronavirus is not why it needs cleaning.

I’ve encountered people who believe witch hazel will be better than alcohol for sanitization, people who believe that antibiotics are better than antivirals, people who don’t understand the difference between different kinds of sanitizers, and similar misunderstandings or misconceptions. If you’re interested, we can take more time to discuss these, but what you really really need to know is that there is one very clear winner for what stops coronaviruses before they get inside you, and that is SOAP.

Regarding coronaviruses on surfaces, there’s also been a lot of confusion and hype. There was an article that the media picked up and misinterpreted a couple weeks ago that talked about how long coronaviruses last on different surfaces. The methodology wasn’t reported well or clearly, so I have some concerns about the quality of that study, but the media latched onto one idea — the 9 days part — and ran with it, implying that if someone coughs outside or in an office the surface is infectious for weeks. NOT TRUE. If you actually read the article, what it really said is:

(a) in a hospital room where a patient with a coronavirus infection of any sort (not just COVID-19) has had a procedure done (such as being intubated) the virus can possibly last a long time on surfaces that aren’t properly cleaned, but we don’t know if it’s infectious or not; and

(b) the only intervention shown to make a real difference in transmission in a pandemic situation is more hand washing stations. In the hospital. Specifically in the Emergency Department.

So, please, unless a sick person was intubated in your dining room or something like that, you don’t need to go do an extreme cleaning your house. Clean, yes, but don’t get anxious over it.

More Thoughts on SOCIAL DISTANCE

What is social distance? First, this basically is being used to mean too far to touch if you both tried really hard, and then add a bit more. Ten feet is ideal, but unrealistic. Six feet is more realistic. It’s not about touching, though, it’s about coughing, and how far the droplets travel in the air. If you have short arms, that doesn’t mean it’s okay for you to get closer to people, because you still cough and breathe just like everyone else.

Secondly, the phrase being used is “social distance” but really they are talking about PHYSICAL distance. It’s fine to talk over Skype with a friend. Socializing is necessary and healthy, just keep our physical bodies away from other people.

This is less critical for SOME people, in some situations. If you are at home, in your own house, with the same people who live there all the time, you don’t need to keep social distance as much, unless someone is sick. If one person gets sick then they need to be quarantined, and then EVERYONE in the house needs to also observe the quarantine, unless they have been keeping social distance. I’m currently quarantined, and for us, this means my son can’t go to work. Bummer, but that’s how it works. Even though his job mostly involves working with soap.

More Thoughts on METHODICAL

This is not easy stuff to do. To actually do it, you have to make it a habit, and build it in. You can help build the habits by adopting behaviors that cut down on opportunities to do your usual thing. Don’t want to touch your face with your hands? Put your hands in your pockets, or do something to keep them busy. Finding yourself tempted to give a friend a hug? Maybe visit virtually instead of in person.

For example, let’s say you have a dog that needs to be walked. You can do this, honestly. Even if you are quarantined, but only have mild symptoms, if you wash your hands and face first, wear a good mask and a pair of gloves, and walk the dog in a nature area away from other people, you can walk the dog and not put others at risk. This is especially true if you go walking very early in the morning or late at night, when other people tend to not be out. But if you live on a crowded busy street, and go walk the dog during rush hour, you have a situation and environment where it becomes very hard to keep away from other people, especially if they don’t understand the limitations we’re talking about. My son was walking our dog, and a woman holding a baby in her arms stopped to try to talk to him. Very sweet, but … no. Let’s just not do that.

So when you are building your habits — the habit of handwashing, the habit of soap, the habit of social distancing — build habits that are smart and include things like time of day, your environment, what your neighbors typically do, and things like this. Build habits that protect everyone, not just you.

More Thoughts on AWARE

This could be a big section, so I’ll try to restrain myself.

Part of this is being aware of people around you, your local environment. As you try to practice social distance, is someone walking up behind you? Who’s ahead of you, and how far away are they? How well behaved is that dog on the leash? That child they hold by the hand, are they trying to get loose and run? Is someone about to cross the street coming towards you?

Part of this is being self-aware, of what’s going on in your body, of the people around you. How are your neighbors doing, who needs someone to check in on them? That little tickle in your throat? Did you cough once or twice? How are you using social media and reading the news, and how is it making you feel? Do you need to take a break for your mental health?

Part of this is being aware of what information is coming out that could change our understanding of the situation. Check the date of this blogpost, and have I updated it (I would say so at the top). If it’s been a few days or longer, the best information might have changed. Right now, with the COVID-19 situation, information is changing so fast no one can entirely keep on top of it, even the experts. Because of this, you may get very different information on the same day from different medical professionals. Don’t just take what you hear for granted, especially if it will make a difference to what you do in your life or how you might put a loved one at risk. Check out more details, ask questions, try to find someone you trust to find out and make sense of it. Most of all, don’t assume anything, don’t take what you hear on face value. Look for authoritative sources who agree on it. Try to find at least three trusted sources saying the same thing, and who get their own information from different places. If the recommendation is all based on pieces that cite the same article, that counts as ONE information source, not three. (I’m thinking of that 9-day figure that freaked people out last week, and was promoted in dozens of news articles.)

More Thoughts on RESPONSIBLE

You heard this from other people. This isn’t about any individual. That’s hard for Americans to hear, land of cowboys and free ranges, frontier heroes. I’m remembering the song from Oklahoma, The Farmer and the Cowman Should Be Friends. In those difficult times, we needed people who were community focused, and those who were out on the edge doing something valuable but alone. We still need both kinds of people, but deciding that it is your personal individual right to go to a party and be wild does not make you a cowman, it just makes you a fool. Don’t be that person. Sure, stand up for your own rights, but think carefully about what those are, and how they impact on the people around you. Right now, if you go to a party, and come back, even if you don’t get sick, you could pass along the virus to someone else, who passes it along to their friend, who passes it along to the dad with cancer, or kid with type-one-diabetes, or their grandma, and that person becomes the one who doesn’t make it. Do you want that on your conscience? Actually, someone who would do that will probably just say, “You can’t prove they got it from me. They could have gotten it anywhere!” Right.

More Thoughts on THOUGHTFUL

Most people want to help, and be helpful. But what people are doing to help, isn’t always actually helping. There’s a lot of sharing of misinformation. I just discovered this great resource which is collecting high quality evidence resources right along many of the myths and legends of the SARS-CoV-2 coronavirus.

FirstDraft: Find information about coronavirus (Covid-19)

As people have been coming to me with questions, I’ve been doing my own research on each one, and it turns out this will actually handle most of the questions I’ve gotten! YAY! So, check here first, before you share that video you found on how hair dryers can cure your COVID-19 illness. No, they can’t, and even worse, they spread the virus all over everything! Do you really want to be sharing something that will make more people sick? I didn’t think so.

What leaps to mind today are the news articles around the new Imperial UK report that is making so many headlines. If you read the report, it’s scary enough without the way the headlines are presenting it. Most of the headlines I’ve seen say something like we’ll have to socially isolate for 18 months or else, and use language like “chilling,” “drastic,” “draconian,” “staggering.” That’s just going to make every one feel so great, isn’t it? More like feeding despair and hopelessness, and those won’t lead anywhere good for anyone.

What’s the alternative? Well, if we see journalists going for clickbait, look for other journalists talking about the same story. Check out this more balanced piece by John Timmer at Ars Technica or the more positively phrased Atlantic piece by actual doctors, “This is How We Can Beat the Coronavirus.” In general, you might want to bookmark and scan another great Ars Technica COVID-19 resource, “Don’t Panic.” These discuss the assumptions underneath the predictions, and what sort of changes could make a difference to these estimates.

You can also find a mix of hyperbolic and well reasoned thought on social media. You want to be careful, and you want to intentionally look for people providing different views. This thread from Jeremy C. Young has a long discussion, which highlights a point I haven’t seen in any of the news stories — that even the worst case scenario is on-again, off-again, not that we stay in seclusion for 18 months straight!

So stop and think about what you are reading, and what you are sharing. Think about who is listening to you, and are you making it worse or better for others?

IMAGE CREDITS

Sanitary: https://www.publicdomainpictures.net/en/view-image.php?image=157635&picture=washing-dishes-vintage-clipart
Social Distance: https://www.pxfuel.com/en/free-photo-jrfol
Methodical: http://www.publicdomainfiles.com/show_file.php?id=13526394611608
Aware: https://publicdomainvectors.org/en/free-clipart/Eye-contact/56082.html
Responsible: https://www.publicdomainpictures.net/en/view-image.php?image=111574&picture=father-and-son-silhouetteThoughtful: https://www.publicdomainpictures.net/en/view-image.php?image=188584&picture=man-reading

Yes, I Heard About Google’s Project Nightingale (An FAQ, of Sorts)

The Nightingale Pledge: I solemnly pledge myself before God and in the presence of this assembly to pass my life in purity and to practise my profession faithfully. I shall abstain from whatever is deleterious and mischievous, and shall not take or knowingly administer any harmful drug. I shall do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. I shall be loyal to my work and devoted towards the welfare of those committed to my care.

The Nightingale Pledge for Nurses. CC by Wellcome Collection

My social media streams are blowing up with people asking me (a) do I know about Project Nightingale, and (b) what do I think about Project Nightingale (which seems, in most cases, to be code for “how scared should I be?”). And when the first thing I read about it was the WSJ piece, I also was a bit concerned (although I felt much better once I read better sources of information about this). Enough people are asking enough questions that, despite my rarely blogging any more (because I have articles and print publications gobbling up all my writing time!) I’m going to do a very brief post on this to save my time answering.

What is Project Nightingale?
Why did they keep this such a secret?
But Google BOUGHT Our Data!
Doesn’t HIPAA Mean This is Illegal?
But … What If Google Mixes this Data With Their Other Data?
So, This Isn’t a Bad Idea After All?
What Else?
What do I think?

What is Project Nightingale?

Project Nightingale (assumed to be named after Florence Nightingale) is another Google project. This one is based on a partnership with Ascension Health Care, and focuses on improving the healthcare experience and healthcare outcomes. It is doing this both through providing resources, support, and analysis for current clinical encounters for Ascension clinicians and patients, as well as developing future tools.

Why did they keep this such a secret?

They didn’t, exactly. You might have seen articles in the news with phrases like “patients not yet informed,” “Google began Project Nightingale in secret last year”, “Google’s secret cache,” and “Google Secretly Given Access To Medical Data of Millions of Americans,” but that isn’t strictly what happened.

Google had a phone call with their investors last July 25, 2019 where this was mentioned. There was a LOT of stuff mentioned in that phone call (the transcript is eighteen pages long!), and even in the area of health, they also mentioned BrightInsight, Sanofi, and Cardinal Health. The press releases for the various innovations mentioned in the call have been slowly rolling out, one by one. If you were an investor, you would have heard about it. If you scan their earnings calls, you would have known. If you want to see where the next thing is coming from, their Quarter 1 and Quarter 3 transcripts are also up, and you too can know all the things that are, ahem, secret(?). As in not really secret, just not discussed in the press yet. It’s unfortunate for Google that the Wall Street Journal announced this before their official press release came out, but it isn’t terribly surprising. Oh, and by the way? They have a LOT of healthcare customers they are already supporting in similar ways. Lots and lots and lots (over 50). If you are going to be upset about Ascension, you should probably also be upset about at least some of the others.

But Google BOUGHT Our Data!

Errrr. Well, actually, it looks more as if Google is being paid to help work with the data. Ascension is a customer, is described as a customer as well as a partner, and they have hired Google to do this work. Google describes it as “Our work with Ascension is exactly that—a business arrangement” while Ascension describes it as “working with Google to optimize the health and wellness of individuals and communities, and deliver a comprehensive portfolio of digital capabilities.” Business Wire describes it as “Ascension…is working with Google to…deliver a comprehensive portfolio of digital capabilities that enhance the experience of Ascension consumers, patients and clinical providers across the continuum of care.”

“Q: Is Google charging for these services?
A: Yes. Google is delivering services as part of a commercial contract with Ascension, just like any other work we do with healthcare providers.” Our Partnership with Ascension

Doesn’t HIPAA Mean This is Illegal? What about my PRIVACY?

The “P” in HIPAA doesn’t actually stand for privacy. It stands for portability. As in “Health Insurance Portability and Accountability Act.” The point of the “portability” idea is that it is actually a GOOD idea to be able to move health data from place to place. It is good for patients who change doctors, so they can take their own data wherever they want it to be. It is good for patients in the Emergency Room, so they can be treated without having to wait for someone to find their doctor on vacation, and hopefully this helps to avoid errors that can be prevented with this type of information. It is good for doctors and clinics, so they can get on with the business of actually helping the patients in their clinics in a timely and responsive fashion. It is good for researchers, so they can find new ways of helping people. It is probably good for a lot of other people, also, but you get the general idea.

Now, the privacy bit is a little more nuanced. You see, when they wanted to make it possible for health data to move from place to place, it became necessary to think about what could go wrong if that happened.

“The Health Insurance Portability and Accountability Act of 1996 (HIPAA) required the Secretary of the U.S. Department of Health and Human Services (HHS) to develop regulations protecting the privacy and security of certain health information.1 To fulfill this requirement, HHS published what are commonly known as the HIPAA Privacy Rule and the HIPAA Security Rule.” Summary of the HIPAA Security Rule.

Portability came first. Privacy came second, hand in glove with security. Privacy and security are most definitely important, and there are very strict rules with clear penalties. Privacy applies first and foremost to the healthcare providers, the clinics and hospitals where they provide care, and the other staff and employees with access to the data. There’s another misunderstanding people have, where they believe that NO ONE is allowed to share the health data, but actually, patients can share their own data with whoever they want. That’s a whole different blogpost, though.

The gist of it is that, no, HIPAA doesn’t mean your clinic can’t share your data. It means they have to be very careful about who they share it with, how they share it, and that the people they share it with are legally bound to follow the same rules and are subject to the same penalties. This is true for whoever made the software they use to manage your data just as much as it is for the person who makes appointments in the clinic. In other words, if Ascension shared data with Google, and Google shared the data or used it in ways they shouldn’t, both of them would be in big trouble. Google is well aware of this, and emphasize that they have a Business Associates Agreement that describes the rules they are following.

“All of Google’s work with Ascension adheres to industry-wide regulations (including HIPAA) regarding patient data, and come with strict guidance on data privacy, security and usage. We have a Business Associate Agreement (BAA) with Ascension, which governs access to Protected Health Information (PHI) for the purpose of helping providers support patient care. This is standard practice in healthcare, as patient data is frequently managed in electronic systems that nurses and doctors widely use to deliver patient care.” Our partnership with Ascension

Also, well, you remember all that paperwork you signed when you went to your clinic for the first time? You probably already gave them permission to share your data in exactly this way.

“Arguably requiring permission to be obtained before information could be sent to a subcontractor would interfere with smooth business operations.” Google-Ascension: Why Is HIPAA Probably Not Being Violated?

But … What If Google Mixes this Data With Their Other Data?

“To be clear: under this arrangement, Ascension’s data cannot be used for any other purpose than for providing these services we’re offering under the agreement, and patient data cannot and will not be combined with any Google consumer data.” Our partnership with Ascension

So, This Isn’t a Bad Idea After All?

I do not personally know anything about the insides of this specific project or partnership aside from the links above. I do know that in healthcare information technology, this is the kind of partnership we dream of, where people with a range of skills can use data in responsible ways to help create new solutions to help everyone. Solutions that will never ever exist if innovators and researchers don’t have access to a broad array of data representing the diversity of people we want to help. That may sound a bit pie in the sky, and it is, but “you may say I’m a dreamer, but I’m not the only one.” Basically, who knows what will really happen with this project, but the general idea is absolutely something we need.

Susannah Fox: “We as an industry have a lot of work to do to explain the scope of “health data” and “privacy.””

David Wang: “We (physicians) BEG for this in order to help transition care from hospital to home to ambulatory setting (among multiple specialists). There are SO many reasons this is SO important for high quality and SAFE patient care.”

Mrs. Bertha Mason-Rochester: “And I can’t get a copy of my old mammogram without going in person, filling out paperwork, waiting for a CD-ROM and delivering it to my doctor who then tells me it’s incompatible with their system.”

Kate Corbett: “Feedback on this demonstrates misalignment between public perception, what is necessary to deliver cost effective or #valuebasedcare, #HIPAA, and technological capabilities of @Google and other companies. A #HealthIT partner has to be a steward of patient interests as well.”

Chris Hogg: “I think I’m a contrarian on the @google @Ascensionorg news. Google is a clear Business Associate in this arrangement, and unless they violate HIPAA in the use of Ascension’s data, I think they can add a lot of value to (very siloed) data assets. And benefit patients and docs.”

Juhan Sonin: “Legal = ✔️[check]
Potential for interesting outcomes = ✔️[check]
Ethics scale = 🖕[thumbs up]”

Dan O’Neill: “It’s not obvious that this is new; hospitals have been using identified data to try to algorithmically predict re-admissions & adverse events for at least 10 years.
Also seems discordant to demand interoperability, then criticize data access when it happens at scale.”

What Else?

So what’s the problem, if this is actually legal, and Google does what they promised? The problem lies in the perception that there is a problem. As in trust. Here’s a few pieces about that aspect of the Google-Ascension partnership, what they maybe should have done instead of how this unrolled, and … consequences of a lack of trust.

Will Technology Cure Americans’ Health Care System Ills? Considering Google and Ascension Health’s Data Deal by Jane Sarasohn-Kahn.

A Matter of Trust, Perception, Risk, and Uncertainty – The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions

Also, there’s this thing happening, a federal enquiry looking into the Google-Ascension partnership. I don’t know if that’s happening just because this all exploded in the news, or if there is other information that led to this. But it is definitely a thing.

What do I think?

I think that if Google upholds the principles and guidelines of the original Nightingale Pledge, all will be well.

“I solemnly pledge myself before God and in the presence of this assembly to pass my life in purity and to practise my profession faithfully.
I shall abstain from whatever is deleterious and mischievous, and shall not take or knowingly administer any harmful drug.
I shall do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling.
I shall be loyal to my work and devoted towards the welfare of those committed to my care.”

We need YOU! Why Artists Should Make SOME of their Art Free (especially for #GraphicMedicine) #GM2019

Updated July 16, 2019, with livestream info, in-page section links, added a couple content links, corrected a couple typos.


Your Wikimania Needs You
File:Your Wikimania needs you!.jpg by John Cummings https://commons.wikimedia.org/wiki/File:Your_Wikimania_needs_you!.jpg

Trust me, your Wikimania really DOES need you! And that’s what this post is about. I’m here to persuade you that it is worth it to YOU (and to the whole Graphic Medicine community) for artists and creators working in this space to share just one or two representative images of their work. Given that this is not happening right now, I’m sure the immediate reaction is something along the lines of, “Gee, I’d really like to, but, I just can’t.”, “I don’t get how this works, and I’m afraid if I start, people will take advantage of all of my work!” or, “OMG, NO WAY! If I do that, how will I EVER make any money?!? You don’t expect me to work for free, do you?!” Of course, not! This is actually about marketing and helping to draw increased attention to the entire field, which is something that will pay off for everyone. Here’s what I’m thinking. I’m drafting this out as a kind of an FAQ, based on questions that have come up in conversations I’ve been having about this.

QUESTIONS

ANSWERS

Why do I actually need Wikipedia to mention my work?

You’ve noticed when you do a search on just about anything, how in the top five results there is almost always a Wikipedia link? Yeah, that’s why. Also, this.

“Wikipedia averages more than 18 billion page views per month, making it one of the most visited websites in the world, according to Alexa.com, a Web tracking company owned by Amazon.” (Pew Internet, 2015)

If you want people to see your work, to find your work, to buy your work, it really helps if you show up in search results. The top fifteen most visited and most popular websites in 2019, according to SimilarWeb, are Google, YouTube, Facebook, Amazon, Yahoo, [three porn sites], Twitter, Instagram, eBay, Reddit, Wikipedia, Bing, and Craigslist. You are probably already putting some of your content in some of these places, but that doesn’t mean it’s easily found. For comics (and by extension, graphic medicine content), YouTube isn’t the easiest way to show off what you’ve done. YouTube is the #2 search engine on the planet, and a great tool for reaching an audience, but making a video of a comic can be tricky. It’s not easy to search and find content in social media, and Facebook, Twitter, and Instagram seems sometimes to make it difficult on purpose. I could go on at length, but the short version is that Wikipedia is heavily used, and it feeds directly into Google, which is the #1 search engine on the planet. It’s a great way to be found.


So can’t I just make my own Wikipedia page, and put what I want on it?

No. No, you can’t. If you try, they will take it down. Why? Because YOU ARE BIASED about yourself. Go figure. Wikipedia has this policy about neutral content, and they take this extremely seriously.

That’s for you, but it matters also to Graphic Medicine as a field. If you are a big name in the Graphic Medicine field, you probably shouldn’t be editing content about graphic medicine for that same reason. You know all the answers, but you may insert bias into what is supposed to be neutral content.

Here are some tips from marketers (with DOs and DON’Ts) on how to not mess up using Wikipedia for promoting your content.

5 Things to Know Before Using Wikipedia as a Marketing Tool

How to Use Your Wikipedia Page as a Marketing Tool


Surely there’s plenty of graphic medicine stuff in Wikipedia already, right?

If you look in Wikipedia for content around graphic medicine, there’s some. Not a lot. What there is tends to be a little light on content. It’s kind of embarrassing, actually. I mean, how many international conferences have we had? If you look at Wikipedia, you really are going to have trouble telling that Graphic Medicine is a “thing,” that it’s important. We know it is, but how do we show the world that it is?

There’s a few of us who’ve been working hard to try to improve the Wikipedia content around the field of graphic medicine. This involves collaborations, finding partners, learning new skills, and spending time actually doing Wikipedia work. It means helping other people with their projects, and asking them to help with ours. It means proving that you understand Wikipedia’s editing rules and will follow them. It’s work. It’s not easy work. It’s not fast. We can’t do it without your help.

If you look at what graphic medicine content is in Wikipedia, you’ll find very VERY few pictures. Now, explain to me how we show people what our comics are about WITHOUT USING PICTURES? Aren’t pictures kind of the point in graphic medicine?


Why can’t Wikipedia just use my book covers from Amazon?

I wish. That would sure make life easier in some ways. I could just say that Wikipedia has rules saying we can’t do this (which is true), but it isn’t that simple. You see, they have the rules for very good reasons. Wikipedia is truly global resource, and intellectual property laws vary around the world. Even if the law here in the United States (where I am) said it would be fair use to use a picture of the book cover, that doesn’t mean the same is true in other countries.

Wikipedia has very good reasons why they make it a policy to try as hard as possible to only use images with public domain or Creative Commons licensing. Those images are legally safe to use in any country, anywhere around the world. So, your book covers on the publisher’s website? Those might be fair use, maybe, but in general, the idea is let’s not test that if we can avoid it. What they want most for images used in Wikipedia articles are those public domain and Creative Commons images.

“Because we want free content, ideally all images uploaded would be free for everyone, and therefore would be acceptable on our sister project, Wikimedia Commons. Images submitted to Commons are used the same way as images uploaded locally to Wikipedia and are automatically available on Wikipedia—as well as on hundreds of other Wikis run by the Wikimedia Foundation. If you have an image that meets our copyright requirements, please upload it to Commons.” Ten things you may not know about images on Wikipedia


Wikimedia Commons? What’s that? Are their rules different from Wikipedia’s?

What is this Wikimedia Commons? Just the most awesome databank of public domain and Creative Commons images in my experience, with full provenance for each image, sources, detailed information on how to cite that specific image, what kind of credit and attribution you need to provide, what limits are placed on what you can do with that image, and all that good stuff. They also provide images in multiple resolutions, sizes, and sometimes formats. Not just images either, but other kinds of media as well. But images you can find and use in your own art work isn’t why we’re here. Back on topic.

Yes, Wikimedia Commons has their own rules about what images are allowed, just like Wikipedia does. Here are Wikipedia’s rules and their style guide.

For the Commons, the short short version is that it’s okay to add either images you created or photographed yourself or images that are over 75-100 years old, with the extra guidelines that if the image is a photograph of a person, they expect you to get the permission of that person. More on that in a minute. Those are the rules for the images that are straightforward and likely to be legal for anywhere in the world, preferred images. There are grey areas in the rules for things that are sometimes okay (eg. low resolution versions of book covers), and there are types of images they really don’t want (eg. fair use). For the full details on what’s allowed and what isn’t, check the link to their rules. The most important bit to remember is you can upload your own images and decide the permissions for use.


Aren’t there other pictures you can use? You don’t really need mine, do you?

Nope, we really, really, REALLY need your help! Only YOU can share your images, and without examples of your images, how can Wikipedia editors say wonderful things about your work? I have personally searched through THOUSANDS of images in Wikimedia Commons looking for examples that we could use in some of the Graphic Medicine articles on Wikipedia. I found nine. Nine that might qualify. All of them are public domain, and all of them except four were created roughly 70 or more years before the phrase “graphic medicine” became a gleam in Ian‘s eye. Three of those are military, and one is only very superficially related.

Here, I’ll show you. All nine. Whoohoo!

First, here’s the first one that we could use. Wikimedia Commons includes the cover of “The Docs (2010),” publicized as Graphic Novel Helps Corpsmen Cope with Combat-related Stress.

The Docs, a graphic novel by the Naval Health Research Center.

Here’s the second relatively contemporary graphic medicine type of image, also from the US military (this time the Army), highlighting the adventures of “Captain Condom and Lady Latex” in a 1991 era educational comic to help prevent the spread of AIDS.

Shows two streetwise African-American superheroes protecting young men and women from militaristic villains.

Less contemporary (1966), we have a full page from the comic, “A Medal For Bowser,” illustrating the value of animals for research.

Full page from A MEDAL FOR BOWZER.

I’m going to go fast with the others, and just give you small versions of them, but I think you’ll get the idea. These pieces are more of a stretch, as far as being useful for communicating what’s going on in the world of graphic medicine now.

Woman in lab coat recommends self-amputation to a paitent. Cectic (2008)

Comic pokes fun at patent medicinesJudge Rummy (1926)

Jack Benny portrays a doctor selling patent medicines to the unwary.
Medicine Man (1930)

Alien jots notes about the experience of a bedridden human man. Mr Skygack (1907)

Two ladies feel better after soaking their feet in a purchased remedy for corns.Orator Woodward (1900)

A four frame illustration showing the delights and inappropriate humors of laughing gas. Laughing Gas (1800s)

There you go! That’s the visual world of graphic medicine according to Wikimedia Commons! (Unless we help change it.)


We’re only talking about pictures of my art, right? Not pictures of me?

That depends. Are you someone who might someday appear in a Wikipedia article? Yes? Then you might want to consider how you’d like to appear there. Here are the images used for two very influential graphic medicine artists and storytellers, Ellen Forney and Lucy Knisley.

Ellen ForneyLucy Knisley


You keep taking about “Public Domain” images and “Creative Commons” images. What’s the difference?

I’m over simplifying again, but public domain means anyone anywhere can do anything they want with an image. They can cut it, crop it, redraw it, recolor it, convert it into 3d, blend it with other images, make a collage, make a statue, snip out a tiny part and zoom into the details, ANYTHING. Creative Commons does NOT give people full rights to do anything. Creative Commons image licenses have several different types of license, and you get to make these choices. Here are some links to help describe better than I can what some of the issues are, and how making some images Creative Commons can be a brilliant idea, how it can help you as an artist, and how it makes it possible for you to help others.

What you didn’t know about Creative Commons: Creative Commons provides artists with access and raw materials. Big companies benefit too.

“No tool is better than the people”: CC artists in conversation on Collaboration, Community, and the Commons

Jomo Thompson: Is Creative Commons Good for Artists?

Why should I use a Creative Commons License?

How can artists who license their work under Creative Commons make money from their work?


If I make some images available for Wikipedia, what does that mean? Do I have any control over them?

This depends on what license you choose. Creative Commons, the organization, has helpful tools to support you choosing the right license for you, making a decision you are comfortable with. I’m guessing most published graphic medicine artists would want a license that tells people you have to use their name and give them credit for using their images. If you are making an image free, you might want to say that other people can’t use it for anything they sell, or that they can’t modify it at all. There are good reasons to say they can change, and good reasons to say they can’t. That’s a whole other blogpost (or a dozen).


What if someone decides to use the images for something else? Who else can use them, and how?

The short version is that once you make an image Creative Commons, ANYONE can use it. What you control is HOW they use it.

There are some licenses people choose that do say other people can not only use the image, but can change it. Of course, you want people to be able to talk about you and your work in Wikipedia. Having images there also means academics, teachers, scholars, researchers can write and teach about your work and publish about your work without having to get image rights for those images. Teachers can use the images in class, as examples for students, or integrate them in assignments. Other artists might include them in a collage or montage, or might do Andy Warhol-style mashups and manipulations. You can set limits on how far this goes. The most restrictive licenses say the image has to be used exactly as it was provided with no changes, and giving you all the credit each time it is used. They aren’t giving you money, but that’s the only thing they aren’t giving you. The most liberal licenses give people permission to mix and match and mash and generally use your image as a stepping stone to inspire new creativity. And there’s a lot of subtle steps in-between these two extremes.


Are there strategies for sharing images that can protect my copyrighted works and still get something in Wikipedia?

You betcha, but it might mean getting permission from your publisher (or employer, if it was a work for hire). This will depend on any contracts you might have with them, and what rights you’ve given to them. FYI, giving a publisher the rights to a work often means you no longer have those rights. It seems obvious when you say it like that, but it isn’t always obvious to creators that the pictures they drew no longer belong to them.

So, Wikipedia will only take small thumbnails of your book covers. If your publisher wants to have anything higher resolution show up there, you need their help. Another idea is to put in Wikimedia not the final version of an important image but an earlier sketch. You can redraw a scene more simply, or take a small excerpt from a large sketch. The idea is to make the picture different in some significant way from what was copyrighted, and to make this distinction. Of course, you can always use images that didn’t end up being included in the final work, or drawing something new.

If you are considering using an image that’s well known, be sure to check with a lawyer or your publisher/employer to make sure they are okay with your plans and the images you chose. Using a new image means you don’t need anyone else’s permission.

More Questions?

Do you have questions or concerns that I missed? That’s awesome! Add them in the comments or come next Saturday, July 20th, 2019, to an online AMA (Ask Me Anything) at noon Eastern Time. I’ll add the link here once I get the stream set up. Here’s the connection info!

To join the meeting on a computer or mobile phone: https://bluejeans.com/553249603

Connecting directly from a room system?

1.) Dial:
– 1-734-763-1841
– 199.48.152.152 or bjn.vc
2.) Enter the Meeting ID: 553249603

Just want to dial in?

1.) Dial:
+1 734 763 1841 (Last 5 digits from campus)
(US or Canada only)
+1.888.240.2560
International Callers (http://bluejeans.com/numbers)
2.) Enter the Meeting ID: 553249603

Want to test your video connection?
https://bluejeans.com/111

On Facebook and Uncomfortable Ideas

Last night’s moonlight through the window, filtered to make the black photo visible

I’m going to say something unpopular and uncomfortable. Mark Zuckerberg is getting a lot of flack for his comment in the Recode interview about Holocaust deniers. As a librarian, I see that what he’s really talking about is CENSORSHIP.

“I also think that going to someone who is a victim of Sandy Hook and telling them, “Hey, no, you’re a liar” — that is harassment, and we actually will take that down. But overall, let’s take this whole closer to home…

I’m Jewish, and there’s a set of people who deny that the Holocaust happened.

I find that deeply offensive. But at the end of the day, I don’t believe that our platform should take that down because I think there are things that different people get wrong. I don’t think that they’re intentionally getting it wrong, but I think-… It’s hard to impugn intent and to understand the intent.” Mark Zuckerberg, Recode Interview

People are latching onto the small concept and missing the big picture. It was an example, not necessarily a specific. It was an example of something that deeply offends him, but which he is refusing to censor. It was about trying to create a place for unpopular and uncomfortable ideas and conversations, about embracing differences. Ideally, that would be a safe place, an open space, a respectful place, but there’s a lot of people in the world, and I don’t know that very many of them are consistently able to have conversations that are safe, open, and respectful on topics that connect to their fears and wounds.

Think for a minute about ideas that each of us hold which are problematic for others, and what would happen if we applied the same criteria for exclusion to our ideas and voices as we do to the ideas of others that make us feel bad. I have friends who are right wing, and left wing; LGBT, and conservative Christians; scientists, and astrologers; kink aficionados, and asexual survivors of child sexual abuse; highly educated researchers & writers, and people with learning disabilities or from underprivileged and under-resourced backgrounds and communities. My hope is this diversity of people will encourage conversation and awareness across the divides, that we can and will LEARN from people whose thoughts and experiences are different from our own, that we can encourage flexibility and examination and questioning of what is or is not a good trusted information source and why.

So, Facebook isn’t perfect, and people aren’t perfect, and Mark Zuckerberg isn’t perfect, and I’m not perfect. I respect that Zuke is trying. I respect that it is basically impossible to define a conceptual boundary, a line in the sand, for what can and can’t be posted here, without causing harm. There is harm if the line is too loose or too tight. It needs to be a blurry boundary. We need to give people the benefit of a doubt. We need to assume that most people are at heart good people with good intentions, and create opportunities to inform them and ourselves, hopefully creating opportunities to change minds and hearts.

If we tell people they can’t be here, they’ll go somewhere else, and we won’t know who they are, or what they think, or why they think that. We won’t know what they are doing, or what they are planning. We will be creating additional darkness, for unwelcome ideas to fester and turn dangerous.

Zuckerberg had a great response that isn’t getting as much attention as the original remark.

“Our goal with fake news is not to prevent anyone from saying something untrue — but to stop fake news and misinformation spreading across our services. If something is spreading and is rated false by fact checkers, it would lose the vast majority of its distribution in News Feed. And of course if a post crossed line into advocating for violence or hate against a particular group, it would be removed. These issues are very challenging but I believe that often the best way to fight offensive bad speech is with good speech.” Mark Zuckerberg Clarifies, Recode

I don’t know about you, but I’m on Zuckerberg’s side with this.

Yes? Or No? Or HOW? Catching a Predator at Birth (Maybe)

Originally posted at the Krafty Librarian blog.


Catching a Predator at Birth

I almost called this post: “Create attention for your article; write a layman’s summary,” which was the subject line from the e-mail we are discussing locally in trying to decide if it is a predatory publisher or not. (Short version of what we did for those who don’t have time to read the whole story: Identity, Authority, Credibility, Language, Editing, Timing, Licensing, Accessibility, Openness, Sources, Resources. Basically, defining a chain of trust.) I’ve blogged here before about the idea of layman’s summaries, a.k.a. plain language abstracts. They have a great tagline. It’s a great idea. My first reaction was, “How can we help?” Obviously, I think the idea is awesome, and I’ve thought so for a very long time, many years. I am far from the only person to think so. Just take a quick look at these few selected quotes.

DC Girasek: Would society pay more attention to injuries if the injury control community paid more attention to risk communication science?
“We also need to call attention to the injuries that continue to take lives, despite the fact that solid solutions for them have been published in our scientific journals. We need research on translating study findings into public action. Epidemiology and engineering remain central to the field of injury control. We must look to the social and behavioral sciences, however, if we hope to overcome the political and cognitive barriers that impede our advancement.”

Alan Betts: A Proposal for Communicating Science
“Given that the future of the Earth depends on the public have a clearer understanding of Earth science, it seems to me there is something unethical in our insular behavior as scientists.”

Jason Samenow: Should technical science journals have plain language translation?
“Some scientists might resist the onus of having to write a lay-person friendly version of their articles. However, I agree with Betts, it’s well past time they do so”

Chris Buddle: Science outreach: plain-language summaries for all research papers
“1) Scientists do really interesting things.
2) Scientists have a responsibility to disseminate their results.
3) Scientists do not publish in an accessible format.
This is a really, really big problem.”

Chris Buddle: A guide for writing plain language summaries of research papers
“A plain language summary is different because it focuses more broadly, is without jargon, and aims to provide a clear picture about ‘why’ the research was done in additional to ‘how’ the work was done, and the main findings.”

Lauren M. Kuehne and Julian D. Olden: Opinion: Lay summaries needed to enhance science communication. PNAS 112(12):3585. doi: 10.1073/pnas.1500882112
“But rather than an unrewarding burden, scientists (and journal publishers) should consider widespread adoption of lay summaries—accompanying online publications and made publicly available with traditional abstracts—as a way to increase the visibility, impact, and transparency of scientific research. This is a particularly important undertaking given the changing science media landscape.”

This is seen as SUCH an important idea that multiple grants were provided to create a tool to assist scientists in doing this well!

Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR): Plain Language Summary Tool (PLST)

You can find more with this Google Search: (science OR research) (attention OR “plain language” OR “clear language” OR layman OR journalist) (summary OR abstract)

Imagine my excitement when a colleague (many thanks to Kate MacDougall-Saylor) alerted me to a new online publication specifically for this purpose! How PERFECT for Health Literacy Month! A faculty member had asked her if it was a legitimate enterprise. So we looked at the email she’d received, and at the web site.

Dear Dr. XYZ,

We are interested to publish the layman’s summary of your research article: ‘ABC ABC ABC.’ on our website.

The new project ‘Atlas of Science‘ started from 1st October 2015. It is made by scientists for scientists and the aim of the project will be publishing layman’s abstracts of research articles to highlight research to a broader audience.
Scientific articles are often difficult to fathom for journalists, due to the scientific jargon.
Although journalists like to assess the news value quickly, that is by no means simple with most research articles. Writing a short, understandable layman’s summary is a good means to reach this goal.

This makes sense, has a good message, and is accurate about the potential impact so far, but the English doesn’t read as having been written or edited by a native speaker of English, and the formatting is inconsistent. It doesn’t look as if a professional editor did a final review before promoting to the world. Warning Sign #1.

The name of the web site (Atlas of Science) is identical to the highly regarded book from MIT Press and authored by Katy Börner of the Indiana University Cyberinfrastructure for Network Science Center. At first, I thought perhaps they were connected, but quickly realized this was a separate group, simply using the same name. Warning Sign #2.

Most of the rest of the message came directly from the “For Authors” page on the web site (Why, What, Use), except for the instructions.

Submit
∙ Send your summary to info@atlasofscience.org, not later than ##/#/2015.

What do we do with your layman’s summary?
∙ We check the text, and in consultation with you we dot the i’s and cross the t’s.
∙ Your text will be available on the Atlas of Science website, www.atlasofscience.org .
We will actively promote this site to the press.

Please, let us know if you are interested and do not hesitate to contact us if you have any question (simply reply to this email).

This was less worrisome, except … the phrase “not later than” (combined with a date of just over a week to respond) seems to be pressuring the faculty member to respond quickly, without thinking it through carefully, and without time to actually create a well-done plain language summary. Warning Sign #3.

Speaking of a well-done plain language summary, do they explain how to do what they say they want? We checked on the web site. Not really. They tell you what they want, but not how to do it, and they don’t point people to any resources to help them understand what a plain language summary is, what this means, or how to do it. They define no standards, set no guidelines, make only the barest and simplest recommendations (such as word count — 600 words with 2 figures), and do not even mention appropriate reading level. Warning Sign #4.

Does the posted content on the site actually appear to match the stated goals of the site? Not remotely. The pieces posted don’t even match the minimal guidelines they stated in their own criteria. I tested a few of the newest posts. The titles alone (“Regulation of mediator’s expression and chemotaxis in mast cells”, “Minute exocrine glands in the compound eyes of water strider”, “Gene therapy not just counseling for your denim obsession”, tell you these are not plain language, but just to be fair and unbiased, I ran them through a Simple Measure of Gobbledygook (SMOG) Tool, which is only one of several tools and resources available for assessing readability.

Regulation of mediator’s expression and chemotaxis in mast cells
The SMOG index: 20.1
Total words: 766
Total number of polysyllabic words: 180
Total number of sentences: 41

Over 150 words more than the defined limit for the abstract (Warning Sign #5), and written for an audience with a reading level matching those with multiple graduate degrees. The SMOG Index, you see, displays the reading level by number of years of education. 12 is a high school diploma, 16 is a college degree, 18 is a masters, and 20 is well into PhD territory. The average reading level for adults in the United States is roughly 8th grade, meaning that a really well done plain language summary would be written to a SMOG level of 8, at most 12. 20 is a long ways from 12.

Minute exocrine glands in the compound eyes of water strider
The SMOG index: 16.2
Total words: 461
Total number of polysyllabic words: 70
Total number of sentences: 35

Gene therapy not just counseling for your denim obsession
The SMOG index: 18.7
Total words: 573
Total number of polysyllabic words: 79
Total number of sentences: 23

Save your pancreas from diabetes! Your beta cell reserve is critical for prevention and treatment of diabetes.”
The SMOG index: 19.6
Total words: 455
Total number of polysyllabic words: 100
Total number of sentences: 25

It’s easy to see that most of the authors take the word count seriously, and that some of them genuinely tried to reduce the reading level and had an idea of where to start with this. None of them came anywhere close to an 8th grade reading level, and none of them were below college graduate reading level. Warning Sign #6. The writing in the abstracts was highly variable, some included grammatical errors, and there was no sign of editorial oversight. Warning Sign #7.

You get the idea of how the checking is being done. I don’t want to walk you through the excruciating details for every piece, but here are a few more criteria, and then ending with a surprise reveal.

“About Us”: Can’t tell who they are, either individuals or institution. Improper grammar & punctuation. No contact information. Contact form has email address hidden. Warning Signs 8, 9, 10.

Content Sources: Most links are to RSS feeds from major science news services, not unique or locally produced content. For the unique content, authorship is unclear (is author of the plain language abstract the same as the author of the original article?), buried deep in the page, no editor mentioned, and no contact information given for the presumed authors. The links for the original articles go back to PUBMED, not to the original publisher, and nont of them give the DOI number for the articles. Warning Signs 11, 12, 13, 14, 15.

Licensing: For a project of this sort to have the impact it is supposed to on journalists and the public, it would need to have a Creative Commons licensing structure, presumably with attribution. Instead it has “copyright, all rights reserved,” but gives no information on how to get permission to use the content. It appears that the intellectual property rights are held by the website, not by the actual authors. This is (in my opinion) terrible. Warning Signs 16, 17, 18.

Accessibility: Problems using the site on my phone. Tested desktop view, and there are a number of fatal errors, missing ALT tags, empty links, duplicated links, etc. Sloppy, sloppy coding. Nobody’s perfect, but MEDLINEplus has zero fatal errors, just for comparison. If this is from a reputable organization, I’d expect better. Warning Signs 19, 20, 21.

Now, the big surprise! While I was digging around online, I found some of the content, almost verbatim, from an authoritative site! Virtually all of the “For Authors” page is from the Technishe Universiteit, Eindhoven (TU/e). Evidently, they have or had a requirement for graduate students to write a plain language summary of their research prior to graduation. Brilliant concept! The submitted content was reviewed, edited, and selected for possible inclusion in their university research magazine, Cursor. They also had a campus website to host the content. The link for this was broken when I checked today, but the Wayback Machine has several examples over the past several years, including just a few months ago.

The big question now is whether this project is taking the Technische Universiteit model and making it bigger for the world, or was the content stolen from TU/e? There is no way to tell by looking. If this is a genuine project from TU/e, there are some changes they could make to improve the project. If the project is not theirs, I would really love to see the National Library of Medicine recreate a project like this, but done properly. They’ve proven they can. And there is a genuine need.

“Nothing in this world is indifferent to us:” Technology and Ethics through the Words of the Pope

20-09-2015 Incontro Giovani

With the visit of Pope Francis to the United States, I thought it might be interesting and pertinent to explore emerging technologies in the context of the official teachings of the Roman Catholic Church. I self-describe my religion on Facebook as Zen Pagan Catholic (which makes for some interesting conversations from time to time), and primarily practice as a Catholic, but I have a deep fondness for many other faiths as well (Quaker! Judaism! More!) and like to look at ideas and concepts in a broad ethical framework. This is just a small ‘deep dive’ into an area where a global leader in ethics touches on the impacts and ethics surrounding emerging and existing technologies. There are many such, and many ways to explore this.

I thought the image opening this post was a real treasure illustrating how current technologies, services, and memes (selfies? Instagram?) are being adopted by or associated with even institutions as ancient as the Catholic Church. This image, and most of the images used in this post, are from the Flickr stream of the Vatican itself. That says something right there about the adoption and use of social media and new communication technologies by the Vatican and the Papacy.

Earlier this year, Pope Francis released his encyclical Laudato Si’, subtitled “On Care for our Common Home.” It made a lot of buzz, and you’ve probably already heard about it. I immediately started scanning the Italian version, and as soon as I could find the English translation on the Vatican website, I downloaded the PDF. Very quickly I realized that throughout the document there are an enormous number of mentions of technology, its strengths and weaknesses. I was, shall we say, surprised? I wanted to blog about it then, but I think this is actually a better time.

Pope Francis begins Laudato Si’ with establishing the context for it in earlier works of church doctrine, specifically referencing a presentation to the FAO by Pope Paul VI back in 1970 and another from the the Greek Orthodox Patriarch Bartholomew in 2012. Back in 1970, Pope Paul had adopted use of television and the existing technology structure of the times for carrying the message. I was surprised again to learn how many videos are in Youtube of his travels that year: departing from Rome, Hong Kong, Philippines, Syndney (Australia), and more. So, this image from the Vatican of Pope Francis in front of film cameras might be very similar to views that would have existed of Pope Paul VI.

24-09-2015 Visita al Congresso degli Stati Uniti d'America

Pope Francis cites one specific portion of Pope Paul’s words on the risks and importance of technology, but there are some great nuggets in the rest of the speech as well.

VISIT OF POPE PAUL VI TO THE FAO ON THE 25th ANNIVERSARY OF ITS INSTITUTION; Monday, 16 November 1970

“But the carrying out of these technical possibilities at an accelerated pace is not accomplished without dangerous repercussions on the balance of our natural surroundings. The progressive deterioration of that which has generally come to be called the environment, risks provoking a veritable ecological catastrophe. Already we see the pollution of the air we breathe, the water we drink. We see the pollution of rivers, lakes, even oceans – to the point of inspiring fear of a true «biological death» in the near future, if energetic measures are not immediately and courageously taken and rigorously put into practice. It is a formidable prospect which you must diligently explore in order to save from destruction the fruit of millions of years of natural and human selection. In brief, everything is bound up together.”

“Will the prodigious progressive mastery of plant, animal and human life and the discovery of even the secrets of matter lead to anti-matter and to the explosion of death? In this decisive moment of its history, humanity hesitates, uncertain before fear and hope. Who still does not see this? The most extraordinary scientific progress, the most astounding technical feats and the most amazing economic growth, unless accompanied by authentic moral and social progress, will in the long run go against man.”

“We must repeat this today: the Church, on her part, in every domain of human action encourages scientific and technical progress, but always claiming respect for the inviolable rights of the human person whose primary guarantors are the public authorities.”

“One of the best assured invariable principles of your action is that the finest technical achievements and the greatest economic progress cannot effect by themselves the development of a people. However necessary they may be, planning and money are not enough. Their indispensable contribution, like that of the technology which they sponsor, would be sterile were it not made fruitful by men’s confidence and their progressive conviction that they can little by little get away from their miserable condition through work made possible with means at their disposal.”

The words and thoughts are so powerful and so relevant today, that I find it almost hard to believe they were spoken roughly 45 years ago. The really critical part is “unless accompanied by authentic moral and social progress.” I don’t care what religion you are, or aren’t, that much should seem like common sense: that technological discovery unbounded by ethics is a risk to all. Isn’t that the story behind an overwhelming number of science fiction stories and novels? Take a technology, just one, and see how it could go wrong. Then try taking two, or three. And then just imagine everything we are discovering now, all of it. It is frankly astonishing that we persist, and it speaks well of us that we do. That we haven’t destroyed ourselves yet, despite so many close calls, is hopeful. How long can we ride this rollercoaster and keep from flinging ourselves off?

That’s the introduction. Now, what does Pope Francis say to expand on these earlier thoughts from Pope Paul VI? He mentions technology at least 95 times in the encyclical. NINETY-FIVE TIMES in six chapters, with the preponderance of them in Chapter Three: “The Human Roots of the Ecological Crisis”, for which the first section is titled, “Technology: Creativity and Power.” Whoa. Frankly, technology, while a significant presence in the document, is only a small part of it. Here is a visualization of the major themes in Laudato Si’. You can find “technology” at the tip of the far left lobe of the leaf.

Laudato Si 2

When he does mention technology, sometimes it is to point out technologies of concern, or philosophies of concern, and other times it is to point out technologies that are desperately needed, or which need to be more widely available. This document is the opposite of a Luddite point of view, instead carefully and judiciously framing the conversation around technology in the context of where is it helpful for the world and humanity, as compared to when is it simply being developed out of curiosity, laziness, or for its own sake. Obviously, Pope Francis argues clearly and strongly for a sane, humane philosophy of technological development and access, within the overarching vision of stewardship and responsibility. Because the document as a whole focuses on ecology, it is often assumed that this is all that’s in it. Pope Francis takes it farther, talking about technology in the service of equity and social justice, medicine, transportation, artistry, welfare, and others, attempting to show through that diversity how a single challenge connects throughout the entirety of human life and how we touch and connect throughout the entirety of the context in which we exist, the world.

At least, that’s the way I’m reading the document. I’ve selected just a few examples (24), a few snippets, phrases and sentences that seem illustrative to me. There is much that was relevant to the questions and concerns raised, written in beautiful language, that is perhaps not explicitly focused on technology. Much of what he says on other topics echoes strongly the debates in healthcare from the empowered patient movement, the flipped clinic conversations, and other initiatives designed on making healthcare more responsive and patient-centric. Where he talks about economics and lifestyle choices, it echoes the need for patient choice, and placing clinical guidelines and recommendations within the context of the patient’s goals and priorities for their own life. Pope Francis places a strong emphasis on collaborative and shared decisionmaking. I have made a conscious effort to not select the non-technological quotes for this post, but I sincerely hope that these few tidbits below might inspire you to look more deeply into this exceptionally lovely, deeply thoughtful, and eloquent essay.

Festival of families in Philadelphia Festival of families in Philadelphia

ENCYCLICAL LETTER LAUDATO SI’ OF THE HOLY FATHER FRANCIS ON CARE FOR OUR COMMON HOME

1.

“I urgently appeal, then, for a new dialogue about how we are shaping the future of our planet. … Obstructionist attitudes, even on the part of believers, can range from denial of the problem to indifference, nonchalant resignation or blind confidence in technical solutions. We require a new and universal solidarity. … All of us can cooperate as instruments of God for the care of creation, each according to his or her own culture, experience, involvements and talents.”

2.

“Technology, which, linked to business interests, is presented as the only way of solving these problems, in fact proves incapable of seeing the mysterious network of relations between things and so sometimes solves one problem only to create others.”

3.

“[T]heir disappearance will have to be compensated for by yet other techniques which may well prove harmful.”

4.

“We must be grateful for the praiseworthy efforts being made by scientists and engineers dedicated to finding solutions to man-made problems. But a sober look at our world shows that the degree of human intervention, often in the service of business interests and consumerism, is actually making our earth less rich and beautiful, ever more limited and grey, even as technological advances and consumer goods continue to abound limitlessly. We seem to think that we can substitute an irreplaceable and irretrievable beauty with something which we have created ourselves.”

5.

“The social dimensions of global change include the effects of technological innovations on employment, social exclusion, an inequitable distribution and consumption of energy and other services, social breakdown, increased violence and a rise in new forms of social aggression, drug trafficking, growing drug use by young people, and the loss of identity.”

6.

“Furthermore, when media and the digital world become omnipresent, their influence can stop people from learning how to live wisely, to think deeply and to love generously. In this context, the great sages of the past run the risk of going unheard amid the noise and distractions of an information overload. Efforts need to be made to help these media become sources of new cultural progress for humanity and not a threat to our deepest riches.”

7.

“Today’s media do enable us to communicate and to share our knowledge and affections. Yet at times they also shield us from direct contact with the pain, the fears and the joys of others and the complexity of their personal experiences.”

8.

“It is remarkable how weak international political responses have been. The failure of global summits on the environment make it plain that our politics are subject to technology and finance. There are too many special interests, and economic interests easily end up trumping the common good and manipulating information so that their own plans will not be affected. … The alliance between the economy and technology ends up sidelining anything unrelated to its immediate interests.”

9.

“In some countries, there are positive examples of environmental improvement: rivers, polluted for decades, have been cleaned up; native woodlands have been restored; landscapes have been beautified thanks to environmental renewal projects; beautiful buildings have been erected; advances have been made in the production of non-polluting energy and in the improvement of public transportation.”

10.

“Finally, we need to acknowledge that different approaches and lines of thought have emerged regarding this situation and its possible solutions. At one extreme, we find those who doggedly uphold the myth of progress and tell us that ecological problems will solve themselves simply with the application of new technology and without any need for ethical considerations or deep change. At the other extreme are those who view men and women and all their interventions as no more than a threat, jeopardizing the global ecosystem, and consequently the presence of human beings on the planet should be reduced and all forms of intervention prohibited. Viable future scenarios will have to be generated between these extremes, since there is no one path to a solution.”

11.

“The basic problem goes even deeper: it is the way that humanity has taken up technology and its development according to an undifferentiated and one-dimensional paradigm.”

12.

“We have to accept that technological products are not neutral, for they create a framework which ends up conditioning lifestyles and shaping social possibilities along the lines dictated by the interests of certain powerful groups. Decisions which may seem purely instrumental are in reality decisions about the kind of society we want to build.”

13.

“A science which would offer solutions to the great issues would necessarily have to take into account the data generated by other fields of knowledge, including philosophy and social ethics; but this is a difficult habit to acquire today. Nor are there genuine ethical horizons to which one can appeal. Life gradually becomes a surrender to situations conditioned by technology, itself viewed as the principal key to the meaning of existence.”

14.

“Yet we can once more broaden our vision. We have the freedom needed to limit and direct technology; we can put it at the service of another type of progress, one which is healthier, more human, more social, more integral. Liberation from the dominant technocratic paradigm does in fact happen sometimes, for example, when cooperatives of small producers adopt less polluting means of production, and opt for a non-consumerist model of life, recreation and community. Or when technology is directed primarily to resolving people’s concrete problems, truly helping them live with more dignity and less suffering. Or indeed when the desire to create and contemplate beauty manages to overcome reductionism through a kind of salvation which occurs in beauty and in those who behold it. An authentic humanity, calling for a new synthesis, seems to dwell in the midst of our technological culture, almost unnoticed, like a mist seeping gently beneath a closed door. Will the promise last, in spite of everything, with all that is authentic rising up in stubborn resistance?”

15.

“There is also the fact that people no longer seem to believe in a happy future; they no longer have blind trust in a better tomorrow based on the present state of the world and our technical abilities. … This is not to reject the possibilities which technology continues to offer us. But humanity has changed profoundly, and the accumulation of constant novelties exalts a superficiality which pulls us in one direction. It becomes difficult to pause and recover depth in life.”

16.

“We were created with a vocation to work. The goal should not be that technological progress increasingly replace human work, for this would be detrimental to humanity. Work is a necessity, part of the meaning of life on this earth, a path to growth, human development and personal fulfillment.”

17.

“It is difficult to make a general judgement about genetic modification (GM), whether vegetable or animal, medical or agricultural, since these vary greatly among themselves and call for specific considerations. The risks involved are not always due to the techniques used, but rather to their improper or excessive application.”

18.

“Ecology, then, also involves protecting the cultural treasures of humanity in the broadest sense. More specifically, it calls for greater attention to local cultures when studying environmental problems, favouring a dialogue between scientific-technical language and the language of the people. Culture is more than what we have inherited from the past; it is also, and above all, a living, dynamic and participatory present reality, which cannot be excluded as we rethink the relationship between human beings and the environment.”

19.

“Attempts to resolve all problems through uniform regulations or technical interventions can lead to overlooking the complexities of local problems which demand the active participation of all members of the community.”

20.

“Merely technical solutions run the risk of addressing symptoms and not the more serious underlying problems. There is a need to respect the rights of peoples and cultures, and to appreciate that the development of a social group presupposes an historical process which takes place within a cultural context and demands the constant and active involvement of local people from within their proper culture. Nor can the notion of the quality of life be imposed from without, for quality of life must be understood within the world of symbols and customs proper to each human group.”

21.

“Taking advantage of abundant solar energy will require the establishment of mechanisms and subsidies which allow developing countries access to technology transfer, technical assistance and financial resources, but in a way which respects their concrete situations, since ‘the compatibility of [infrastructures] with the context for which they have been designed is not always adequately assessed’.”

22.

“This does not mean being opposed to any technological innovations which can bring about an improvement in the quality of life. But it does mean that profit cannot be the sole criterion to be taken into account, and that, when significant new information comes to light, a reassessment should be made, with the involvement of all interested parties. The outcome may be a decision not to proceed with a given project, to modify it or to consider alternative proposals.”

23.

“Compulsive consumerism is one example of how the techno-economic paradigm affects individuals.”

24.

“By learning to see and appreciate beauty, we learn to reject self-interested pragmatism. If someone has not learned to stop and admire something beautiful, we should not be surprised if he or she treats everything as an object to be used and abused without scruple. If we want to bring about deep change, we need to realize that certain mindsets really do influence our behaviour. Our efforts at education will be inadequate and ineffectual unless we strive to promote a new way of thinking about human beings, life, society and our relationship with nature. Otherwise, the paradigm of consumerism will continue to advance, with the help of the media and the highly effective workings of the market.”

Plain Language Summaries for Translation in Science

First posted at the Krafty Librarian blog.


translationalhand1

At MLA last May, I was walking around the vendor hall, like most of us who attended, I assume. I was on a mission, though. I stopped by every vendor table that had anything to do with publishing or translational science, and talked with them at length about the idea of having plain language abstracts. I’ve been a fan of plain language initiatives for a long time, as evidenced by our library’s Plain Language Medical Dictionary app from some years ago. I wish I could say that I was doing this as a direct result of the PNAS article on the topic published in March, but no such luck. That would have helped make my arguments more compelling, I’m sure. I found the article today, thanks to the National Science Communication Institute retweeting Len Fisher.

A circuitous route, but effective enough to reach me. The article in question was this.

Lauren M. Kuehne and Julian D. Olden. Opinion: Lay summaries needed to enhance science communication. PNAS 112(12):3585–3586. doi: 10.1073/pnas.1500882112 http://www.pnas.org/content/112/12/3585

The article was short and sweet. It talked briefly (very briefly) about alternative modes of science communication, such as social media and blogs, and how they impact on audience, understanding, and adoption of new ideas. The authors then pointed out that these are limited to the few who choose to follow that channel, and it misses the benefits and affordances of mass media channels, a concept which they illustrated with a diagram of how they perceived the connections between the information channels and the audiences. Here’s the gist of it.

Scientists communicate with the public through these channels:
1) Social media and press releases
2) Journalist contacts
3) Lay abstracts
4) Traditional abstracts

The potential audiences are:
1) Public
2) Managers and decisionmakers
3) Scientists in other fields
4) Scientists in your own field

So far so good? There are obviously many more potential audiences as you subdivide these. In my conversations I was rather fond of mentioning insurance companies and agents as critical links in the chain of adopting healthcare innovations who are perhaps more likely to benefit from a plain language abstract. I also talked about the importance of highly motivated patients who take new articles to their clinicians as a recent and influential loop in the information chain that changes practice. For benefits to come through these channels requires not simply that there be a version of the abstract that is in plain language (a lay summary) but also, and equally important, that those lay summaries not be behind a paywall. One of the publishers was absolutely sure their abstracts were not being a paywall, and then when they went to show me, well (ahem), they found they were. As in, the abstracts were locked behind a paywall. Oops.

The most important part of the article’s diagram was the very subtle sideways dashes. Where do the journalists get the hook, the info that leads them to ask more questions and write those mass media articles that reach such large audiences? What triggers the journalist to reach out for those important conversations with the scientists? Well, the press releases, of course. That’s why our organizations work so hard on them. Seeing something posted and reposted on social media is another good way to reach them. But the traditional abstract? Not so much. The traditional abstract is crafted explicitly for other scientists in your field, and only partly for scientists beyond that. Now, a lay summary, a plain language abstract, that has HUGE potential as a way to reach journalists. It’s another marketing tool, beyond being the right thing to do to help patients, or to help get science into the hands of those who actually use it, or to help influence clinical practice and foster more rapid adoption of new discoveries and treatments.

What Patients Think About Clinical Trials, Take 2 (#bioethx)

At the Doctor's Office: Push For Help

ADDENDUM

Within minutes after the previous post went live, I was contacted on Twitter by another patient advocate, Willow, also known as Serious Skeptic. She* expressed another wide area of patient concerns about clinical trials, ones that were new to me, and which deserve representation in this post, even if they aren’t from the official public #PatientChat event. Because Willow has a locked account, and I respect that, I asked her permission to share the links and the essence of some of her private tweets. The following is posted with her consent, but represents my words and distillation of what I learned from her.

Willow was concerned about ethical breaches in clinical trials, especially:
– trials that are designed specifically to promote use of a drug (marketing);
– trials that suppress undesired findings or which fail to publish or share negative findings;
– trials that don’t share their data;
– trials that don’t make relevant or useful findings available to all trial participants.

I had the impression she’d kind of like the research studies to also notify trial participants of publications that do result from their participation. I know, I do, myself, and being a medical librarian, I take notes on my research participation, the names of studies, the names of the PI, and I stalk their publications for years until I see the research in which I participated. I often ask to be alerted, and usually received some sort of polite demurral, and nothing else. I wish they had an email list I could just subscribe to for alerts from their lab.

Anyway, when Willow described clinical trials that are actually marketing ruses, my reaction was, “Whoa! Not really? Doesn’t the IRB process protect against that?” Evidently not. The concept she was describing most is called seeding trials. Here are some links she shared with me, or quotes and/or resources from those articles.


A physician is invited by a pharmaceutical company to take part in a study involving an FDA-approved drug. The physician’s responsibilities entail prescribing the drug for patients and then completing three questionnaires about each patient’s experience with the drug. The questionnaires are quite short and will take about 20 minutes each to complete. The sponsor will pay $1,500 for each completed questionnaire. The physician is very interested in participating because it looks like a great way to increase practice revenues.

Rusczek JP, Rusczek AM. Fraud and Abuse in Clinical Research: Three Case Studies. ABA Health eSource June 2010 6(10). American Bar Association. http://www.americanbar.org/content/newsletter/publications/aba_health_esource_home/Rusczek.html
– Research Involving Non-Employed Physician Investigators
– Marketing Disguised as Research
– Double Billing

The public has lacked convincing documentary evidence of a long-suspected drug company practice: promoting a new drug by sponsoring a randomized trial in which participating physicians use the drug as they follow the trial protocol. This practice—a seeding trial—is marketing in the guise of science. The apparent purpose is to test a hypothesis. The true purpose is to get physicians in the habit of prescribing a new drug.

Sox HC. Seeding Trials: Just Say “No.” Ann Intern Med. 2008;149(4):279-280. doi:10.7326/0003-4819-149-4-200808190-00012 http://annals.org/article.aspx?articleid=742309

Seeding trials are designed to appear as if they answer a scientific question but primarily fulfill marketing objectives. Kessler and colleagues (3) portrayed seeding trials as “attempts to entice doctors to prescribe a new drug being marketed by the company” while the company puts its product in the hands of practicing physicians, hoping that the experience of treating patients with the study drug and a pleasant, even profitable, interaction with the company will result in more loyal physicians who prescribe the drug (4).

Hill KP, Ross JS, Egilman DS, Krumholz HM. The ADVANTAGE Seeding Trial: A Review of Internal Documents. Ann Intern Med. 2008;149:251-258. https://www.leg.bc.ca/cmt/39thparl/session-4/health/submissions/Hill_The_Advantage_Seeding_Trial_2008.pdf

“Merck’s marketing division handled both the scientific and the marketing data, including collection, analysis, and dissemination; and Merck hid the marketing nature of the trial from participants, physician investigators, and institutional review board members.”

Keim B. Merck Vioxx Study Disguised Marketing as Science. Wired 08.19.08 1:22 PM. http://www.wired.com/2008/08/merck-vioxx-stu/

Merck minimized the true risks of Vioxx (Apr 17, 2008) https://www.youtube.com/watch?v=PQYxZSUDnqI

The maker of Neurontin disguised an effort to promote the anti-seizure drug to physicians as a clinical trial and failed to inform involved physicians and patients, according to a new analysis published Monday in the Archives of Internal Medicine journal.

Girion L. Neurontin study was a sham designed to boost drug sales, researchers say in medical journal. Los Angeles Times June 27, 2011. http://articles.latimes.com/2011/jun/27/news/la-heb-neuronton-seeding-trial-20110627

Seeding trials are an unethical, dangerous way to market a product. The IRB needs to become a better-equipped committee that can identify seeding trial practices from honest clinical trials, and the FDA needs to demand more transparency from companies sponsoring clinical trials, to better protect public health and the integrity of clinical research.

Varga M. Are Seeding Trials Ethical? Kulkarni Law Firm Blog June 11, 2012 11:11. https://www.conformlaw.com/blog/are-seeding-trials-ethical/

Recommended Principles to Guide Academy-Industry Relationships. American Association of University Professors. University of Illinois Press, Jan 25, 2014. See the endnotes on pages 341-2. https://books.google.com/books?id=lFSNAgAAQBAJ&pg=PA341&lpg=PA341&dq=drug+seeding+trials&source=bl&ots=AEZ1Xa7NUS&sig=W_nCm_h2w7Uhtf5tWd4V6sf5ggI&hl=en&sa=X&ved=0CDIQ6AEwAzgeahUKEwjw9JWVyovGAhWjWowKHTvgAJQ#v=onepage&q=drug%20seeding%20trials&f=false


Because of the risks and distrust generated by the practice of seeding trials, Willow suggested that it might be wiser to wait to test new meds on your own body until they’ve been out for a few years, unless you are so ill that you have no alternatives. Now, of course, if everyone does that, then there are NO NEW DRUGS because we can’t test them! And that is a situation in which we all lose.

My own choices? I take risks that I won’t ask others to take. I try to be informed about the risks I take. When I participate in a research study, I ask a lot of questions, and I pay very close attention to my body. If my canary-in-the-mine body complains, I withdraw from the study. Well, I would. So far, I’ve never actually needed to withdraw from a research study, but I have ceased taking actual FDA-approved meds prescribed for me that my body couldn’t handle. I’m hoping that the #bioethx chat group will pick up on this topic next, and hoping they can find an invited speaker to talk about what IRB committees have done and are doing to try to address this, to build confidence in medical research.


* I am assuming Willow is a she because I interpret the name Willow as a female name. I have no knowledge or confirmation of that, and it isn’t any of my business anyway. I am using the female pronoun to describe her simply for convenience, and intend no disrespect.


ADDENDUM TWO, June 13

A few clarifications and corrections from the ever thoughtful Willow.

Willow feels my concern about limiting drug discovery isn’t valid, since seeding trial occur for drugs that are already patented. My concern is that fear of seeding trials will scare some participants off of drug trials entirely. Drug discovery trials are legitimate, but the problem remains that it can be difficult to distinguish discovery trials from seeding trials, since the physicians and patients are both kept in the dark by the drug manufacturers.

Where the Weird Things Are

So, when I got back from my trip to MLA, I went to work, and this weird thing happened.

See what I mean? And it did feel weird. I was talking to someone today about why it felt weird, and it’s basically because I’m not doing anything that special, nothing that I don’t know perfectly well people all around me are also doing. So why not give them ALL awards, eh? The parable (or parallel) I have is weddings, graduations, and such. They aren’t for YOU. The marriage is for you, but the wedding is for your friends and family. The degree and what you do with it is for you, but the graduation ceremony is for your friends and family. Right? The award is less about anything I’ve done, at least in my mind, and more about saying in a public way that all of you who are doing the same kind of cool things, YAY for you! YAY for us! Keep doing it, that’s the kind of stuff we want in our community. Does that make any kind of sense?

Ironically, I had just returned (at about 1:30AM that morning!) from a conference in Austin, where the slogan is, “Austin. Keeping it weird.” I had officially heard about the award that morning, and a bunch of colorful ideas flooded into my mind. I thought I’d say a few words, and that idea got … well … I got carried away. Evidently, whatever I said was OK, because some folk told me, “Whoa! You went all “The Moth” on us!” Other people came up afterwards and said, “Me, too.” Since then, individuals have been telling me they were hearing others talking about it. And I was asked to try to write some of it down and blog it. I’m kind of murky on what exactly I said, but I do still have the approximately 25 words of notes that I scribbled down in the morning. So here goes, not trying to remember word-for-word, but generally trying to keep the same tone and feeling.

JUST A FEW WORDS

I just got back from Austin, where the local badge of pride is reflected in the slogan, “Keeping it weird.” I was looking at tshirts to bring back to the family, and noticed one that I just had to get for myself. (I was actually wearing it at the celebration, but no one could see it becauseI had other garments over it.) The one I had to get was a parody-slash-mashup of Where the Wild Things Are.

Wild Things

The tshirt said, “Where the Weird Things Are.” Of course, I had to get it! Books, right? Right!

Where the weird things are

So they told me that morning that I was going to get the Diversity Award today. I was thinking about weirdness, who’s weird, what does it mean to be weird, how does weirdness tie in with diversity. There was a trending hashtag on Twitter, #DescribeYourselfIn3Words. My first reaction was, “Well, that’s not very diverse! Three words isn’t very much to describe any of us. But I tried. I did it twice. That’s six words. I suppose that’s probably cheating? Here’s what I called myself.

#DescribeYourselfIn3Words: Militant Moderate Librarian

First, I said, “Militant moderate librarian.” To me, this describes my identity, that I am a librarian down to the bone, deep in my soul, and my view of what it means to be a librarian: unbiased by intention and determination. It’s a LOT of work.

#DescribeYourselfIn3Words: Inspire, Be Inspired

Next, I said, “Inspire, be inspired,” which I see as my job description, and I know that many of us working here in this library system feel the same way. I adopted that one from Hugh McLeod, “Gapingvoid.” I saw this years ago, when I was new to being the Emerging Technologies Librarian, and had just gotten my income tax refund, so indulged (HUGELY, this was a BIG indulgence for me) and bought it. It hangs on my wall right now, where I will see it every single day. It means a lot to me.

Gapingvoid: Inspire, Be Inspired

So, while three words aren’t very many, especially in the sense of describing an entire complete unique quirky diverse individual or community, but maybe they can serve as a kind of mission/vision statement, or emotional touchstone.

Library Diversity Celebration: Walk in my shoes.

The theme of today’s event is “Walk in My Shoes.” I’ve been walking around, looking at the displays, reading the signs, reading the stories. They’re pretty amazing. The grandmother who was a ballerina? I love that one. James’ story about the shoes that make you more wonderful when you believe in them? Powerful! Here are my shoes.

My Shoes

Down at the conference in Austin, someone told me they are great classic librarian shoes. Yeah. Boo hiss. I wasn’t too happy, either. I told him these are not so much librarian shoes as medical prescription shoes. I have foot orthotics, and foot pain. I wear these shoes because the orthotics fit into them and because they don’t hurt as much. Before I wore foot orthotics, I had some beautiful shoes. Purple, green, red. Hightops colored like blueberries and lined with soft terrycloth. Deep purple Converse hightops my daughter gave me for my 50th birthday. Spiked heels striped with earth tones. Elegant flats decorated with clip on red and black accents. Tennis shoes that belong in a Brooklyn Museum: Rise of Sneaker Culture, decorated and carved with geisha, comics, flowers, leaves. Leaving footprints that reveal an ukiyo-e kiss.

New Green Shoes: StitcheryNew Green Shoes: Light and Shadow

I love my old shoes. Sometimes I loved them so much that they would wear out, the sole would tear off, and I would save them for years trying to find another pair. Now, I wear old lady librarian shoes, the same pair, all day, every day. And I have a closet of beautiful shoes I can’t wear, but can’t bear to give away, at least not yet.

Curiously, shoes are how I first got into diversity. Really! How many of you remember Highlights Magazine for Children? It had a very distinctive style of art work, and the stories were all educational and/or morally uplifting.

chatold woman with fishbowl and goose

My parents always had a subscription to this, as long as we had kids in the appropriate age ranges, and we had a lot of kids. It must have been when I was very young, just learning to read, when I saw a story about learning to “walk in another man’s moccasins,” only they called it the “in the skin game.” I thought this sounded fantastic, fascinating, amazing! The story asked the children to stop and imagine what the other person in the story might be feeling, where they came from, what their family was like, what was going on that wasn’t visible that made them act the way they did. The story came to an end, but the game didn’t. I found it so deeply engaging and fascinating, I kept doing it. People watching. Trying to understand. Evidently, I never really learned to turn it off!

Lately I’ve been doing a lot of reading about what is called Intergenerational Transmission of Trauma (IGTT). Sometimes it’s called Transgenerational Transmission of Trauma (TGTT).

Google Scholar Search: (“intergenerational transmission of trauma” OR “transgenerational transmission of trauma” OR “inter-generational transmission of trauma” OR “trans-generational transmission of trauma”)

Briefly, the idea is that a predisposition to experiencing traumatic events is passed along from parent to child, like a baton in a race, handed on from generation to generation.

“The idea that a parental traumatic experience could reach the second generation soon gained consistency. Clinical studies reported a wide range of affective and emotional symptoms transmitted over generations: distrust of the world, impaired parental function, chronic sorrow, inability to communicate feelings, an ever-present fear of danger, pressure for educational achievement, separation anxiety, lack of entitlement, unclear boundaries, and overprotectiveness within a narcissist family system.” (Braga, Mello, Fiks, 2012)

Most of the research on this idea has been done in easily identifiable communities which have experienced severe trauma in a generational context. African American families that experienced slavery. Jewish and Polish families of Holocaust survivors. Native American or First People families. Families of war and combat veterans. Refugees. With domestic violence it’s harder to identify a research study cohort, but they’re looking at this, too.

All around the room heads were nodding. How many of us have families that have experienced trauma? How many of us have families that have NOT experienced trauma?

When the research first started, they believed that the process of transmission, of passing along the trauma, came from children imitating the behaviors and beliefs of the parents, or that the parents (consciously or unconsciously) taught the children maladaptive ways to respond to the world, based on their own experiences of trauma. Now, researchers are starting to believe it runs deeper than that. Research is leaning towards the idea that significant trauma of these sorts can literally rewrite our genes, and can change what genes are preferentially passed on to our children. I’ll do another blogpost about this, but just try searching epigenetics of trauma to dip into the literature.

The gist of the idea is that the experience of trauma causes changes to many of our body’s systems, most importantly the immune system, hormone levels (especially cortisol), as well as the brain and nervous system. To put it even more briefly, trauma early in our life or our parent’s lives can make us more likely to get sick physically later, to develop mental illness, and to respond to life in ways that make us more likely to experience trauma ourselves. The changes to the brain either make it so people over react to potentially threatening environments, or under-react. Either way, it puts them (us?) at heightened risk through a response that is out of sync with the actual threat level.

Our friends and colleagues who come from cultures rich in traumatic pasts may still be experiencing things in their own lives that were shaped generations ago. Does that mean that IGTT gives everyone with a familial history of trauma a “get out of jail free” card for responsibility for our own actions? Not exactly. Yes, we have to understand how this shapes trauma across generations, and shapes the actions of people now. Sometimes I’ll ask people, “Be a little more understanding of this lady, she’s in severe pain pretty much all the time, and that’s why she’s a little short tempered. Be patient.” That idea applies here, too. None of us know what the other person is going through, what they have gone through, what their parents or grandparents went through. I wonder how my life might have been different if my mother hadn’t been badly abused as a child, if her mother hadn’t been subjected to extreme prejudice and poverty through racism, if my dad’s dad hadn’t had addictions, and so forth. I might have been a completely different person. I expect most of us have something in our family histories along these lines. There are tales that are not passed along, at least verbally, but they still show in our genes. It can hurt you, even if you never knew it happened.

The good news is that our genes and our family history can ALSO foster resilience! And that for the epigenetic changes we’ve been passing along from generation to generation, we CAN begin to break the cycle. Here are some things that seem to be helping in some communities (with more details and sources coming in another blogpost):

a nurturing social environment;
especially giving added nurturing early in life;
providing safe places and spaces;
giving future at-risk parents support and training in parenting before they become parents;
teaching resilience, appropriate responses to stress and threat;
teaching how and when to trust, building social decisionmaking skills;
giving and modeling genuine healthy attachments, love, and caring;
identifying and dealing with the trauma;
and sleep.

We’re still learning what works, and what works best. To me, it sounds like a big part of the issues of IGTT tie directly into the vision and missions of diversity initiatives in corporations and enterprises all across the world.

Know the problem.
Say the problem.
Change the things that made the problem.

Isn’t this one part of why we have diversity initiatives? Partly to try to fix the problems, partly to stop perpetuating the problems, and partly because there are so many wonderful people and wonderful possibilities that we miss out on when we aren’t including different points of views and different kinds of people. All three of those impact on the day to day life for all of us. Fixing the problems helps reduce crime, improve health, reduce costs, improve creativity, and ultimately improve resilience across our entire society.

To tie this all up, where are the weird things? Well, not just in Austin, that’s for sure. We are all of us weird, just some of us are more weird than others. And that’s ok, as long as we accept it, and make a safe space for everyone. So.

Where the weird things are?

Here.

Here, is where the weird things are.
Us, we are the weird things.

My New (Gapingvoid) Tshirt! (And my job description) 150529

Blue is for Borgs (On WAAD), Let’s Walk in Red Instead

Borg cyborg prosthetics Walk In Red

It happens every year now. I end up having a gentle, delicate but firm conversation with someone (individual or organizational representative) who really, REALLY want to do something to be supportive and help people with autism, and to do so they have jumped on the bandwagon of the “Light it up Blue” movement founded by Autism Speaks. They mean well, but they don’t realize the broader context.

BLUE = Autism Speaks

World Autism Awareness/Acceptance Day
World Autism Awareness/Acceptance Day

When the context is provided, they either say, “I didn’t know,” or “Don’t we get brownie points for good intentions?” or “Well, it might mean that for you, but not for us,” or “That’s only true in America,” or “It’s too late, we already committed.” The folk who say, “I didn’t know” are usually actually listening, and will make a change in the future. I’m not so sure about the others. I’ve written letters to companies that are “going blue” and collecting funds to donate, trying to make them more deeply aware of the impact. There are companies where I no longer shop, and have told them why. Not that it really has any significant impact, from what I can tell. And I’m afraid that each complaint, like this one, ends up instead feeding the adoption of the campaign, creating free publicity, and feeding negative messages about autism that lie at the heart of what Autism Speaks does.

Here let me explain. Briefly.

SELECTIVE TIMELINE OF AUTISM RIGHTS MOVEMENT

1970 – April chosen as National Autism Awareness Month in the United States by the Autism Society.
1995 – First Autreat, November.
2002 – Autism Awareness Year in the United Kingdom
2002 – Autism Sunday, second Sunday of February, launched in London
2005 – First Autistic Pride Day, June 18th, in Brasil with the theme “Acceptance not cure”
2005 – First Autscape began July 26, near Somerset, UK
2006 – Autism Acceptance Project founded by Estée Klar
2007 – World Autism Day designated by the United Nations
2008 – First World Autism Day, April 2
2010 – First Light It Up Blue (#LIUB) Campaign launched by Autism Speaks
2011 – Autism Acceptance Day created by Paula Durbin Westby
2015 – First Walk in Red campaign (supported by Paula Durbin Westby).

Walk In Red

You see that autism advocacy has a long and strong history, before and after the first efforts by Autism Speaks. What has happened with the Autism Speaks efforts is basically that they have, well, co-opted the idea of the World Autism Day for awareness and fundraising of their own projects. I’m serious. Here, look at some definitions of the word “co-opt.”

Free Dictionary: co-opt
“1. to choose as a member.
2. to assimilate or win over into a larger group.
3. to appropriate as one’s own; preempt.”
“3. To take or assume for one’s own use; appropriate: co-opted the criticism by embracing it.
4. To neutralize or win over (an independent minority, for example) through assimilation into an established group or culture: co-opt rebels by giving them positions of authority.”

Merriam-Webster: co-opt
“: to cause or force (someone or something) to become part of your group, movement, etc.
: to use or take control of (something) for your own purposes”
“2 a : to take into a group (as a faction, movement, or culture) : absorb, assimilate
b : take over, appropriate (a style co–opted by advertisers)”

Autism Speaks have a LOT of money behind them, connected with a lot of famous folk, and have built that into such a strong brand recognition that when you search for Autism Day in Google, you have to actually scroll way down to find the links to the United Nations, the folk who are REALLY behind it. All of the top leading links about it are for Autism Speaks and their fundraising efforts.

Google Search: Autism Day

Whoa. And again, WHOA. And the whole thing with “Blue”? That was to match the Autism Speaks logo. Yes really. So, even if people aren’t aware of it, even if they’ve forgotten, every time someone connects “blue” with “autism” they are creating more support and awareness for the organization Autism Speaks, their fundraising campaigns, their marketing, and their agendas.

Is that such a bad thing? After all, they are a charity, and the money still all goes to support people with autism, right? Wrong.

Not to say that Autism Speaks do nothing worthwhile (some of their Toolkits are genuinely useful), it is the organization’s underlying tenants are viewed with alarm within the larger autism advocacy community, who don’t necessarily have the millions of dollars to get eyes on their ideas. Here is a tiny selection illustrating some of those concerns.

Autistic Self Advocacy Network (ASAN): 2014 Joint Letter to the Sponsors of Autism Speaks

John Elder Robison: I resign my roles at Autism Speaks

ASAN Vancouver Disability Day of Mourning: Introductory Speech

Forbes: Why Autism Speaks Doesn’t Speak For Me

The Daily Beast: “Autism Speaks”- but Should Everyone Listen?

Boycott Autism Speaks

Autism Women’s Network: Is Autism Speaks a Hate Group?

The controversial and contentious dialog seems to center on these issues.

Awareness versus Acceptance

Awareness vs Pride

Assimilation versus Inclusion

Stigma versus Respect

Now, let me go back to the beginning of this post. The Borg. What the community of autism advocates is seeking is to celebrate their skills, talents, uniqueness. The United Nations theme for World Autism Day this year focuses on the value of persons with autism as employees (click on the word “inclusion” above). This has also been celebrated recently by the Wall Street Journal and Entrepreneur. In its long history, the autism advocacy movement quickly shifted from simple “awareness” to more active and joyful celebrations of the value of persons with autism. I’ve been tracking the Autism Speaks controversy for a very long time. I don’t need to explain here how what they do tends instead to undermine those happier and loftier goals.

I do have a personal stake in this. My son has autism. My brother has autism. There are some who think I have autism and was just never diagnosed. I wouldn’t be surprised. Last time I was home, I rescued this beautiful piece of blown glass made by my autistic brother, who was preparing to discard it as not meeting his standards. It wasn’t good enough. I love it, treasure it, and keep it in my office where I see it everyday.

Blown Glass (discard)

Also last time I was home, the pastor of my brother’s church made a point of telling me how important and highly valued he is in their faith community. I don’t want to hear anyone tell either my brother or my son that they aren’t good enough, or that they need to be assimilated. I have many friends who are on the autism spectrum. Some of them are even non-verbal, with what is considered severe autism. I tell you, when my friend who is non-verbal is complaining on Twitter about something her husband said to her, knowing that she couldn’t argue back … well, let’s just say, I don’t think of her as being non-verbal.

What is it that we want of people with autism? Do we want to treasure them and celebrate their uniqueness? Or …

“We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. … You will be assimilated.”

If you still think of “blue” as the color of autism, you may not even be aware how it happened, but you have already been assimilated.

MORE ON THE RHETORIC OF AUTISM

Paul Heilker and Melanie Yergeau. Autism and Rhetoric. College English 2011 73(5):485-497. http://www.jstor.org/stable/23052337?seq=1#page_scan_tab_contents

Autism and Rhetoric (a Prezi synthesizing the high points of the Heiler & Yergeau article).
https://prezi.com/kz2mvlhp-7gz/autism-and-rhetoric/

Alicia A. Broderick. Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse. Disability Studies Quarterly 2011 31(3). http://dsq-sds.org/article/view/1674/1597

Paul Heilker. Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 2012 32(4). http://dsq-sds.org/article/view/1756/3181

Emily Malabey. How the Rhetoric of Autism Speaks Has Hurt Autistic People. Council for Autism and Neurodiversity November 15, 2013. http://www.autismcouncil.org/?p=2802

PF Anderson. Beyond “Light it Up Blue” — Maybe “Light it up Gold”! https://etechlib.wordpress.com/2014/04/02/beyond-light-it-up-blue-maybe-light-it-up-gold/
(Check out the Storify of Ibby Grace presenting on this)