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

45 Graphic Memoirs and Graphic Novels on Social Justice Themes

Comics on Global & Social Justice

One of the debates in the Graphic Medicine community is whether or not social justice titles actually count. Some folk include them because they embody issues around what is currently referred to as “social determinants of health” or because they are of interest to the specific community they serve, while others suggest that with limited budgets and space, we should really focus on comics that explicitly touch directly on health, healthcare, and medicine. There’s a range, and for me, I tend to throw out a broad and inclusive net. Graphic novels and graphic memoirs which touch on social justice themes often can be of great value in empathy building or can serve as touchstones for challenging conversations around issues of access, inclusion, equity, and related topics as they touch on healthcare.

Today, the #medlibs Twitter chat focused on social justice. More on that.

Yesterday was the ALA webinar, “Libraries, Comics, & Superheroes of Color.” More on that.

Do you get the impression these ideas have been on my radar recently?

A couple weeks ago, Jeff Edelstein and I were asked for suggestions of graphic novels and graphic medicine titles along themes of social justice and global scholarship. I promised to collect our suggestions in a blogpost, so we can find them more easily in the future. Here we go!

The list of titles is alphabetical. The links for the titles are not to places you can buy them, but to reviews of the books. I tried to select the reviews from a variety of quirky and interesting places where you might want to browse to find more information on graphic novels or comics or social justice. Some of the books are about recent history or current events, others are more distant history. Some of them may not strike you immediately as ‘social justice’ but they all carry social justice elements and themes. I tried to select some which are well known and others which are not as well known. The purpose of the entire list is to try to direct you from this selected list to a vastly broader world of similar books out there waiting to be discovered. Trust me, there’s a lot more where these came from, and more stories waiting to emerge and waiting to be told. There are more links to extra resources at the end of the post.

TITLES

  1. American-Born Chinese, by Gene Luen Yang.
  2. The Arab of the Future: A Childhood in the Middle East, 1978-1984: A Graphic Memoir, by Riad Sattouf.
  3. Aya: Life in Yop City, by Marguerite Abouet and Clément Oubrerie.
  4. The Best We Could Do, an Illustrated Memoir, by Thi Bui.
  5. Brazen: Rebel Ladies Who Rocked the World by Pénélope Bagieu.
  6. Death Threat, by Vivek Shraya.
  7. Drowned City: Hurricane Katrina and New Orleans, by Don Brown.
  8. Far Tune: Autumn, by Eisele Bowman.
  9. HIROSHIMA, The Autobiography of Barefoot Gen, by Keiji Nakazawa.
  10. Hostage, by Guy Delisle.
  11. Illegal, by Eoin Colfer, Andrew Donkin, Giovanni Rigano.
  12. La Perdida, by Jessica Abel.
  13. Love is Love, by Marc Andreyko, Sarah Gaydos, Jamie S. Rich.
  14. March, by John Lewis, Andrew Aydin, Nate Powell.
  15. Maus, by Art Spiegelman.
  16. The Mental Load: A Feminist Comic by Emma.
  17. My Brother’s Husband and Volume 2 by Gengoroh Tagame.
  18. Pashima by Nidhi Chanani.
  19. Persepolis (And Persepolis 2; or the complete edition), by Marjane Satrapi.
  20. The Photographer: Into War-Torn Afghanistan With Doctors Without Borders, by Emmanuel Guibert, Didier Lefèvre and Frédéric Lemercier.
  21. The Port Chicago 50: Disaster, Mutiny, and the Fight for Civil Rights, by Steve Sheinkin
  22. Primates: The Fearless Science of Jane Goodall, Dian Fossey, and Birute Galdikas, by Jim Ottaviani.
  23. PTSD, by Guillaume Singelin.
  24. Pyongyang: A Journey in North Korea by Guy Delisle.
  25. Queer: A Graphic History, by Meg-John Barker and Julia Scheele.
  26. A Quick & Easy Guide to They/Them Pronouns by Archie Bongiovanni and Tristan Jimerson.
  27. A Quick & Easy Guide to Queer & Trans Identities, by Mady G. and J.R. Zuckerberg.
  28. Radioactive, by Lauren Redniss.
  29. Rolling Blackouts: Dispatches from Turkey, Syria, and Iraq, by Sarah Glidden.
  30. Run For It: Stories Of Slaves Who Fought For Their Freedom, by Marcelo D’Salete.
  31. Safe Area Gorazde: The War in Eastern Bosnia 1992-1995, by Joe Sacco.
  32. Sally Heathcote: Suffragette, by Mary M. Talbot and Kate Charlesworth
  33. Second Avenue Caper: When Goodfellas, Divas, and Dealers Plotted Against the Plague, by Joyce Brabner and Mark Zingarelli.
  34. Secret Identities: The Asian American Superhero Anthology, by Jeff Yang, Parry Shen, Keith Chow, Jerry Ma, Jef Castro.
  35. Spiral Cage, by Al Davison
  36. They Called Us Enemy, by George Takei.
  37. Threadbare: Clothes, Sex, and Trafficking, by Anne Elizabeth Moore.
  38. Unterzakhn, by Leela Corman.
  39. The Unwanted: Stories of the Syrian Refugees, by Don Brown.
  40. Vietnamerica: A Family’s Journey, by GB Tran.
  41. Waltz With Bashir A Lebanon War Story, by Ari Folman and David Polonsky.
  42. Where We Live: A Benefit for the Survivors in Las Vegas, by J. H. Williams III and 150+ contributors.
  43. With Only Five Plums, by Terry Eisele.
  44. Your Black Friend and Other Strangers, by Ben Passmore.
  45. Zahra’s Paradise, by Amir and Khalil.

WANT MORE?

Resources from the University of Michigan

Transnational Comic Studies Workshop (TNCSW on Facebook)

UMich: Library Guide: Comics and Graphic Novels about the Civil Rights Movement

From Other Libraries

Indiana University, Southeast: Library Guides: Diversity in Graphic Novels and Comics

Seattle Library: Social Justice Graphic Novels

General Resources

**We Need Diverse Comics

Canadian Children’s Book Centre: Social Justice & Diversity Book Bank

The March Education Project.

National Council of Teachers of English. Diversity in Graphic Novels: Booklists.

Social Justice Books: Teaching for Change: Graphic Novels

Social Justice Book List, edited by Katherine Bassett, Brett Bigham, and Laurie Calvert. NNSTOY, 2017.

Teaching Tolerance: The Social Justice League (Toolkit).

Scholarly & Professional Publications on Social Justice in Comics

Bennett, Colette. A Comic Book Helped to Inspire the Civil Rights Movement. The Educator’s Room, August 7th, 2017.

Greenfield, David. Beyond Super Heroes and Talking Animals: Social Justice in Graphic Novels in Education. (Dissertation) Pepperdine University, December, 2017.

Hunter R. Comics As “Bibles” for Civil Rights Struggles. ACLU, 2014.

Irwin M, Moeller R. Seeing Different: Portrayals of Disability in Young Adult Graphic Novels. ALA School Library Research 13, 2010.

Moeller R, Becnel K. Drawing Diversity: Representations of Race in Graphic Novels for Young Adults. School Library Research Journal 21, February 2018.

Robbins M. Using Graphic Memoirs to Discuss Social Justice Issues in the Secondary Classroom ALAN v42n3

Wickner A. Teaching Social Justice With Comics. Education Week, September 5, 2013.

Popular Media & Blogs on Social Justice in Comics

Brave in the Attempt: SOCIAL JUSTICE LEARNING WITH THE X-MEN AND OTHER GRAPHIC NOVELS

Bustle: 10 Graphic Novels Written By Activists That You Need To Read Now More Than Ever

The Conscious Kid: 15 Diverse Graphic Novels for Middle Grade or Teen Readers

Huffington Post: 10 Compelling Graphic Memoirs that Will Make You a Devoted Fan of the Genre

Ouch Blog: With great power comes great disability

Paste: Beyond March: 10 Other Graphic Novels That Confront Prejudice

Planet Jinxatron: 7 Fantastic Graphic Novels About Politics, Race, and Activism

Tales from the Nerdy: Disabled or Mislabeled: Comics and Graphic Novels About Disabilities Bibliography

WE: The need for diversity in comic books

Roundup: On Accessible & Inclusive Conferences & Meetings

Accessible? Twist handle, then pull

I just returned from the annual meeting for the Medical Library Association, where multiple discussions arose around what would it look like to expand what is done to make the conference both accessible and inclusive. [Yes, the image at the head of this post is an actual photo from the actual meeting.] Just a couple weeks before that I was privileged to attend “Cripping” the Comic Con 2019 which was, by FAR, a truly exemplary model for how to create an inclusive event. (I’m hoping to write a second post about what blew my mind so much about CripCon!) Pretty much the same topic also arose in one of my Facebook groups, Teaching Disability Studies, where several of the resources mentioned here where shared.

Since my organization (UofM) has done some work in creating resources around this, and since I was on the original committee that created our resource, I volunteered to share that resource with MLA and put together a collection of selected resources related to this topic. The resources collected here are organized alphabetically within section (resources, readings) by either the author or providing organization. Organizations represented in the post include:
– ABA (American Bar Association)
– ACM SIGACCESS
– ADA National Network
– ASAN (Autism Self Advocacy Network)
– New York State
– Ohio State University
– Syracuse University
– University of Arizona
– University of British Columbia
– University of Michigan
– Vera Institute of Justice

RESOURCES

ABA Section of Civil Rights and Social Justice. Planning Accessible Meetings and Events, a Toolkit https://www.americanbar.org/content/dam/aba/administrative/mental_physical_disability/Accessible_Meetings_Toolkit.authcheckdam.pdf

You want to know what the lawyers think about what you should do? Well, start here. This 22 page PDF provides a number of thoughtful strategies to promote accessibility and inclusion in events, from working with attendees and presenters in an interactive way to plan the best possible event to post-event surveys designed to elicit information on accessibility improvements needed for future events. I’ve been working in disability spaces and communities most of my life, and they had suggestions that were new to me. I have some more work to do. This one is a must read.

ACM SIGACCESS. Accessible Conference Guide. https://www.sigaccess.org/welcome-to-sigaccess/resources/accessible-conference-guide/

It’s a bit amazing to me how each of these guides has something wonderful and necessary that I missed seeing or which wasn’t included in the other guides. This one includes discussions around making events safe for people with migraines, having drinking straws available, and where can a service dog relieve themselves with causing problems for the event. They point out that simply asking for a sign language translator doesn’t tell you which version of sign language the viewer needs, since there are regional and country variations which can be quite significant. They include example draft language for eliciting accommodation requests from attendees, registration, formatting your promotion material PDFs accessibly, and having a triage plan in case problems arise. This document is updated regularly, and this newest version was just updated a few weeks ago (April 2019). Note that they also have an Accessible Writing Guide and an Accessible Presentation Guide. Must read.

ADA National Network. A Planning Guide for Making Temporary Events Accessible to People With Disabilities. https://adata.org/publication/temporary-events-guide

Okay, this thing has chapters. I mean, CHAPTERS. That tells you something. In some ways, it’s almost too detailed. However, it also focuses almost exclusively on physical factors (venue, parking, toilets) and has very little on the interaction or experience. While this is highly detailed, the intended audience seems to be focused on government or community event planners, and not for professional events or conferences. This is more of a basic introduction to what is involved, and is intended for broad audiences. Also available as a 61 page PDF and a 119 page large print PDF.

ASAN: Planning Accessible and Inclusive Organizing Trainings: Strategies for Decreasing Barriers to Participation for People with I/DD https://autisticadvocacy.org/resources/accessibility/ PDF: https://autisticadvocacy.org/wp-content/uploads/2017/11/White-Paper-Planning-Accessible-and-Inclusive-Organizing-Trainings.pdf

While several of the other resources listed here focus primarily on physical barriers to inclusion, this document is absolutely essential for those with sensory integration concerns or learning disabilities. It explains and describes the impacts of such factors as loud or unpredictable noise, motion, and other stimuli; unpredictable events; abstract or overly-complex language; speaking spontaneously (or putting people in situations where they are expected to improvise their reactions); body language; touch; and much more. It includes information on scheduling that describes the need for breaks, use of plain language content, color communication badges, and the risks to the audience of some popular presentation engagement strategies. This is the only of the resources listed here to richly describe the role of support persons in events. I doubt it would be possible to plan an inclusive event sensitive to any of these issues without, at a minimum, reading a document like this one, or being close to someone who shares these issues and concerns. A must read.

New York State, Department of Health: People First: How To Plan Events Everyone Can Attend https://www.health.ny.gov/publications/0956/

This is a lovely document which includes both high level thinking around accessible events as well as fairly detailed specifics. This is one of few of these types of resources that spends time on the importance of developing a formal policy with specifications for events, and has suggestions for approaching the development of a policy if your organization lacks one. It includes nitty-gritty suggestions, such as “Plan for 30% more meeting space when 10% or more of the participants will use mobility aids,” having ramps to the stages, and how to look for tripping hazards. Absolutely a must read. Also available as a 13-page PDF.

Ohio State University: Composing Access, An invitation to creating accessible events https://u.osu.edu/composingaccess/

Includes information on making accessible presentations, including live-streaming and handouts (when, why, and how), as well as the expected accessibility thoughts and practices for conference organizers. Includes resources; ways to encourage attendees to act as advocates for accessibility and inclusion; descriptions and videos for creative practices like interaction badges, quiet rooms, “crip time,” and more.

Syracuse University: A Guide to Planning Inclusive Events, Seminars, and Activities at Syracuse University http://sudcc.syr.edu/resources/event-guide.html

Available only as a 27 page accessible PDF. This exceptionally detailed resource is far too rich a resource to do justice to in a brief description. Syracuse is the home of Cripping the Comic Con, and it is clear that they have really put considerable time and thought into not only conceptualizing accessible events, but putting this into practice, seeking feedback, and learning from experience. It has four appendices, of which the most essential, to my mind, is Diane Wiener’s example introduction in Appendix B. In addition to the usual content (planning, venue, promotion, and presentation) this guide includes prudent practices for inclusive use of language, use of images and media, the role of environment (fragrance, sound/noise, lights, color), and much more. This is my own preferred go-to guide for starting with this. I guess that means I should mark it a must read, too.

University of Arizona: A Guide to Planning Accessible and Inclusive Events https://drc.arizona.edu/planning-events/guide-planning-accessible-and-inclusive-events

A short example of how to write a resource like this for a campus community. Includes a brief but helpful section on how to train event support staff.

University of British Columbia: Checklist for Accessible Event Planning https://equity.ok.ubc.ca/resources/checklist-for-accessible-event-planning/

Exactly what it says — a collection of terse reminders of what should be remembered. Includes roughly 60 entries in 7 categories (planning, marketing, transportation, space, programming, catering, final). Available as a 9 page PDF download.

University of Michigan: Ten Tips for Inclusive Meetings https://hr.umich.edu/working-u-m/workplace-improvement/office-institutional-equity/americans-disabilities-act-information/ten-tips-inclusive-meetings

This information in this resource is presented in a layered fashion for ease of access, action, and remembering, similar to the UBC checklist. The ten tips are very short, focusing on major areas to consider, but include links to richer information for those willing to explore more deeply. The design stresses retention and adoption of the concepts by making them easy to access and simple to remember. Main areas included are scheduling, accessible presentations, promotion, restrooms, food and drink, personal assistance, offsite participation, representation, transportation and navigation, and options for help for event planning and management.

Vera Institute for Justice: Designing Accessible Events for People with Disabilities and Deaf Individuals https://www.vera.org/publications/designing-accessible-events-for-people-with-disabilities-and-deaf-individuals

This isn’t a guide or a checklist. This is a toolkit, and boy, does it have a lot of different tools. They have several different tip sheets focusing on special aspects of meetings and events, from registration to budgeting, and including venues and how the meeting itself is handled. They even have a tip sheet for working with Sign Language Interpreters, and how to develop successful contracts with hotel management (which sounds worth its weight in gold). These aren’t one page tip sheets, though. The tip sheet for designing accessible registration is 7 page long. That’s a lot of tips. These are so well done that countless other disability organizations host copies on their own websites and recommend them for their own audiences and clients. These are another must read.

Additional resources & examples

ACS-ALA, Accessibility and Libraries, October 4, 2017. Rough edited CART copy (Webinar transcript). https://docs.google.com/document/d/1JIVc5-QcvBb74AitQXrnFfHReYk6nnKez3gR33llHvU/edit

ALA Annual: Accessibility https://2019.alaannual.org/general-information/accessibility

Inclusion BC: How-to Make Your Event More Inclusive https://inclusionbc.org/our-resources/how-to-make-your-event-more-inclusive-2/ PDF: https://inclusionbc.org/wp-content/uploads/2019/02/Makeyoureventinclusive.pdf

NCCSD Clearinghouse and Resource Library: Inclusive Event Planning https://www.nccsdclearinghouse.org/inclusive-event-planning.html

WorldCon 76: https://www.worldcon76.org/member-services/accessibility

TO READ

This is a twitter thread from a few weeks back that “won Twitter,” as in it went viral, with 144 replies, 294 Retweets, and 1,562 Likes. It began with Alex Haagaard’s mention of their own accommodation requests at conferences, and resulted in a highly educational thread of accommodations people need or wish they could request at conferences. I recommend reading this thread for any conference planners or organizers.

MORE

“If part of what we train our students to do is enter into scholarly conversations, how we go about that conversation in our own professional settings matters.”
Accessibility at ASECS and Beyond: A Guest Post by Dr. Jason Farr and Dr. Travis Chi Wing Lau https://asecsgradcaucus.wordpress.com/2019/02/21/accessibility-at-asecs-and-beyond-a-guest-post-by-dr-jason-farr-and-dr-travis-chi-wing-lau/
Includes: “Toward a More Accessible Conference Presentation” https://drive.google.com/file/d/1xzGyfVlMRUwZMjuZ6mef87OXCIfN3uiW/view

“Use the microphone: this gets repeated dozens of times on Twitter every conference for at least the last five years. I guess I’ll just say: yes, abled people, using a microphone indicates that you are considerate of D/deaf and hard-of-hearing folks, and suggesting that others do is beneficial to the audience.”
S. Bryce Kozla. Accessibility and Conference Presentations https://brycekozlablog.blogspot.com/2018/01/accessibility-and-conference.html

“But I believe that losing my hearing was one of the greatest gifts I’ve ever received. You see, I get to experience the world in a unique way. And I believe that these unique experiences that people with disabilities have is what’s going to help us make and design a better world for everyone — both for people with and without disabilities. … I stumbled upon a solution that I believe may be an even more powerful tool to solve some of the world’s greatest problems, disability or not. And that tool is called design thinking.”
When we design for disability, we all benefit | Elise Roy https://www.ted.com/talks/elise_roy_when_we_design_for_disability_we_all_benefit?language=en

#ColorOurCollections 2019 from University of Michigan Collections

These are just a few favorite images from some works I’ve discovered in the University of Michigan Libraries. I turned them into coloring pages because I’m such a fan of the #ColorOurCollections project and because I think we have such wonderful collections here at UM and I like folk to know about them. Absolutely delighted that this year the UM Kelsey Museum took on the challenge!

https://twitter.com/kelseymuseum/status/1093163042026721280

Screenshot of Kelsey Museum tweet with thumbnails of black and white line drawings

#ColorOurCollections from our new coloring book created for the Ancient Color special exhibition! Learn more about the exhibition opening this Friday! (2/8):
http://myumi.ch/L3PjE

I’d love to do a lot more of this! Anyway, here’s just a few.


#ColorOurCollections 2019

From the 1898 edition of the Idylls of the King by Tennyson as illustrated by the Rhead Brothers.
Caption: “A little glassy-headed hairless man.” Original image (old man)


#ColorOurCollections 2019

From the Weird and Wonderful Maps exhibit held at the University of Michigan Maps Library a couple years back. Original image (map)


#ColorOurCollections 2019

Bookplate: Ship (Earl J. Dinges, DDS). Original image (ship)


#ColorOurCollections 2019

A Child’s Book of the Teeth, 1921. Original image (marching tooth)


#ColorOurCollections 2019

Dental Patent (circa 1890s): A new or improved toilet set for tooth powder, tooth brushes, and the like. Original image (toothbrush set)


#ColorOurCollections 2019

Macro: Flame demon. From an exhibit of historical anatomy curated by Barbara Shipman several years back. Original image (macro)

Health & Healthcare at #CES2019

I was working on a blogpost about wearables, smart textiles, and household tech for healthcare when the Consumer Electronics Show (CES) kicked off. Let me just step aside for a moment and collect some of the wonderful new and emerging technologies from there. Here’s a bunch of articles, videos, and tweets highlighting some of what was being shown off at CES 2019.

Gadgets were on or in:

  • abdomen
  • belts
  • ears
  • eyes
  • fingernails
  • head
  • stomach
  • wrists

Health & tech topics included:

  • 3D printing
  • AI
  • asthma
  • augmented reality
  • autonomous mobile clinics
  • babytech
  • body temperature management
  • brain activity tracking
  • caregiving with robots or virtually
  • eldertech
  • fall prevention
  • a fitness tracker that doesn’t require charging
  • food technologies
  • heart health and cardiology
  • imaging and radiology
  • incontinence
  • mobility aids
  • personalized health
  • pet health
  • posture
  • stroke recovery
  • surgery
  • virtual reality
  • weight management
  • wheelchairs that navigate based on facial expression

VIDEOS

CES 2019: Wristband ‘Can Control’ Your Body Temperature https://www.bbc.com/news/av/technology-46840471/ces-2019-wristband-can-control-your-body-temperature

ARTICLES & LINKS

The best CES 2019 health gadgets combat stress, pain, and more https://www.digitaltrends.com/mobile/best-health-gadgets-ces-2019/

Blood pressure watches and DIY sonograms: CES 2019 was all about health: At CES, health, wellness and medical tech are big focuses once again. https://www.cnet.com/news/from-a-blood-pressure-watch-to-diy-sonograms-ces-2019-was-all-about-health-tech/#ftag=CAD590a51e

CES 2019: First Alert Previewing New HomeKit-Enabled Smoke Detector-and-Speaker With Mesh Wi-Fi and AirPlay 2 https://www.macrumors.com/2019/01/07/first-alert-new-safe-sound-homekit-smoke-detector/

HealthTech wearables to major at CES 2019 http://healthtechpulse.com/2019/01/08/HealthTech-wearables-major-CES-2019

The Impossible Burger https://impossiblefoods.com

Matrix PowerWatch 2 uses solar and heat to power GPS, heart rate at CES 2019: The future of wearable fitness tech might be charge-free. https://www.cnet.com/news/solar-and-heat-powered-matrix-powerwatch-2-can-run-a-marathon-with-gps-and-heart-rate/

CES 2019: Omron HeartGuide blood pressure watch is for real: Detecting a sneaky heart condition could get a little easier with this watch: Just lift your arm and push a button. https://www.cnet.com/news/ces-2019-omron-heartguide-blood-pressure-watch-is-for-real/

Smoke Detective http://www.smokedetective.com

What’s new and what’s next in consumer health? https://www.linkedin.com/pulse/whats-new-next-consumer-health-roy-jakobs/

TWEETS

https://platform.twitter.com/widgets.js

Winter Break – Bingo!

Images of Christmas, New Years, Chanukkah, Kwanzaa, and Solstice from Open Clip Art https://bingobaker.com/view/1862418

It’s that time of year again! We are slowing down for the end of term, and gearing up (geeking up?) for the winter break. It’s always a good plan to have some extra activities available for those days where so many people are stuck at home. Following on the heels of last year’s tech comics & coloring books, here’s a collection of bingo options for the IT community!

Some of the bingo cards are designed to be played in groups with a caller, while others are designed to be interactive,  with the player filling in the card as they explore a virtual or game space or watch an event or TV show. You can either play bingo from themed cards designed by other folk, or you can make your own. If the kids are getting wild, you might consider having them design their own bingo cards with one of the many online bingo generators or apps. I’ve tried a few, and am rather fond of Bingo Baker, which has a kid-friendly URL, a community of folk sharing ones they’ve already made (please proof them before showing them to a kid), and tools to make and share your own. EduBaker is another option, similar, but a little less polished.

With Bingo Baker, it will randomly generate a number of different bingo cards from the same set of terms or phrases, it adjusts the text to fit the box, and it provides statistics on how many rounds to expect before someone shouts BINGO! For kids, you might suggest that they create a Bingo set of terms on one of their hobbies, or a favorite TV or Netflix show, or a favorite game. With BingoBaker you can also modify or build upon collections someone else already made, so you can customize after you find something on a topic you like. It is also possible to include images or drawings, and you could make a bingo card for spotting cars on those long drives.

Want to have something quick to print and use? There are, obviously, a lot of bingo cards already available online. Here are some along themes appropriate for your IT holiday party or winter gathering.

Of particular interest to me was the new IT security bingo game created by University of California-Irvine as an interactive educational activity for their students. Pretty darned clever! I wonder how it’s been received, or if this would be something to try here.  

If you want something that doesn’t have the risks of the big community collections for younger kids, Chris Osric made a very simple bingo card generator you could explore, and here’s a popular Anime-Bingo generator. There are also guidelines and tips in WikiHow and Instructables for making your own bingo cards, and more.  Examples include the basics, Avengers Bingo (visual), Comic Con Bingo (visual), Hipster Bingo (visual), Human Bingo (an ice breaker for parties), Super Mario, and Super Bowl Bingo for that most magical day (although you might prefer WIRED’s Superbowl Ad Bingo!). Check out these example Comic Con Bingo cards from New York, San Diego, Denver, Dash of Different. There are a TON of cosplay bingo options, but in the interests of remaining family friendly, I’m limiting the options here to the picture-based one from Tampa Bay Times (pdf), Comrade Comics and Anime Expo (both also visual), and the text-based one from AnimeCons.  If you have Arduino geeks in your house, you can make a bingo number generator.  

Last but not least, there are also a number of more family-friendly bingo cards already designed around various geeky and nerdy themes. Here are a few, just for fun, including some that are visual for preschoolers and non-readers. Some of these focus on critical thinking, by scanning for specific patterns of plot or character deficiencies, script crutches, and similar ways to watch a program more thoughtfully. There’s content here for a range of ages, from preschool to high school, so be sure to check them out before giving to the younger crowd.

Have you found or made some you enjoyed? Share them in the comments!