Category Archives: Disasters

It’s about Orlando. But it’s not just about Orlando.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): Wax from burned down candles at the chalked PRIDE flag

This morning I took pictures of UM Diag, where a PRIDE Flag has been chalked in support of the survivors of the Orlando massacre. The candles had burned to the ground, and melted away, leaving wax in the cracks between the bricks.

Chalking Our Pride & Sorrow & Strength & Love (Orlando)Chalking Our Pride & Sorrow & Strength & Love (Orlando): Orlando We Are With You

Last night I was one of a some hundreds of people at the Candlelight Vigil for Peace sponsored by the /aut/ Bar, also in support of Orlando.

Candlelight Vigil for Peace #OrlandoStrong

Yesterday afternoon, I sang with the Out Loud Chorus at Motor City Pride in Detroit.

Motor City Pride & Out Loud ChorusMotor City Pride & Out Loud Chorus

A week before that, I was riding the train home, curled up in a seat by the baggage, away from the other passengers, with tears streaming down my face, grieving for the loss of a dear-to-me friend who was a transgender woman.

DentLib: Exhibit: Boys Will Be Girls, Girls Will Be BoysDentLib: Exhibit: Boys Will Be Girls, Girls Will Be Boys

Two days before that, I’d walked 22,464 steps, because I couldn’t find a cab to get me to the memorial of Robin, one of my BFFs (best friends forever), married-with-children, who had died of cervical cancer.

Robin's MemorialRobin's Memorial

Two weeks before that, the breast cancer community, the healthcare social media community, the WORLD lost Jody Schroger, who I also considered a friend, even though we never met in person, because of the sweetness and richness of our six years of conversations on Twitter. Jody was a breast cancer survivor and advocate, until she wasn’t anymore.

Conversation with Jody - 1Conversation with Jody - 2
Conversation with Jody - 3Conversation with Jody - 4

These things are all connected, and not just through my recent life or experience. They have in common issues of community, loss, love, health, and more. They have in common issues of how to feel safe, how to be safe, how to be heard.

Jody was a hugely influential breast cancer advocate, one of the founders of the famous and successful #BCSM Twitter chat. Jody started out fighting for herself, but that just wasn’t the kind of person she was, so after her diagnosis, she basically spent the rest of her life fighting for everyone else. Yes, especially for breast cancer patients, but it wasn’t long before that became a very gracious and determined effort to encourage equality, access, information, and empowerment for ALL patients.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): I always wish I could to more. Slowly I realize that love is all the more I can give.

Robin had cervical cancer, one of the cancers for which healthcare has done a pretty good job of prevention, or at least really reduced the incidence. Here’s a line from the American Cancer Society about this: “Most invasive cervical cancers are found in women who have not had regular screening.” Now, right up front, I want to say that I don’t really know anything about Robin’s own personal medical history with this, and I wouldn’t share it if I did. What I can share is that sense of hurt and betrayal that comes with the death of a loved one that is perceived as preventable, except for … fill in the blank. While I know that Robin and her family were incredible people, joyful, kind, funny, and generous to a fault, there were times when they had to make tough choices about financial stuff. I’ve had to do the same, but I’ve always had the failsafe of employer health insurance. Not everyone does. I imagine that because there were times when one or another of them worked multiple part-time jobs without insurance, or were self-employed, that perhaps there were a few times when routine screenings for perfectly health people seemed unnecessary. But, as things turn out, the screenings were needed. Is this something that happened because we didn’t yet have Obamacare? Because the insurance people have doesn’t cover what they really need? Is it a question of access or information or health literacy or trust in the healthcare system? I don’t know. But I know that ALL of those issues play a part in the pain and suffering and losses experienced around us every day. And whatever we’re doing to fix them is too little too late for Robin, and I will miss her for the rest of my life.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): "Knowledge was more powerful than fear."

I’ll tell you that while coming home from one memorial is a rough raw time to get the news about another friend’s death. When I got the news, I was no expert, but knew enough about the context of trans* lives to know what you ask when a transgender person dies unexpectedly: suicide or murder? Those are the two questions that leap into your mind, and which you try not to ask. When I hear about a sudden loss of other friends, I’ll ask was it an accident or cancer or some other illness. But not for trans* friends. As friends talked with me about my grief, I was surprised how many had no idea about this.

“From our experience working with transgender people, we had prepared ourselves for high rates of suicide attempts, but we didn’t expect anything like this,” says Mara Keisling, executive director of the National Center for Transgender Equality. “Our study participants reported attempting suicide at a rate more than 25 times the national average.” http://www.commondreams.org/newswire/2010/10/07/study-high-rates-bullying-suicide-attempts-among-transgender-and-gender-non

“A staggering 41% of respondents reported attempting suicide compared to 1.6% of the general population,ii with rates rising for those who lost a job due to bias (55%), were harassed/bullied in school (51%), had low household income, or were the victim of physical assault (61%) or sexual assault (64%).” http://endtransdiscrimination.org/PDFs/NTDS_Exec_Summary.pdf

“The Trans Murder Monitoring (TMM) project systematically monitors, collects and analyses reports of homicides of trans people worldwide. … The name lists present the names and some details about the deaths of the otherwise anonymously reported trans murder victims. These lists are specially compiled for the annual International Transgender Day of Remembrance. The tables present statistics on the world region, country, date of death, location and cause of death, and the age and profession of the victims. The maps illustrate the worldwide scale of the reports of murdered trans persons.” http://tgeu.org/tmm/

If you are one of the good hearted people who is surprised by this, you are probably asking, “Why?” Basically, it comes down to fear as one of the primary motivators of hatred. I could go on a long time, but you are smart folk. Just look in Google for “transphobia” and you will find plenty. For the heartbreak of suicide, I’m a big fan of the Social Media for Suicide Prevention (#SPSM) group who meet on Twitter at 9pm Eastern Time on Sunday evenings. I don’t know of a similar regular chat for transgender life, but there are a lot of Twitter hashtags that might be relevant. Here are just a few: #Transgender / #Trans / #Transpeak / #StopTransMurders / #TwoSpirit. The lesson I take away from these awful statistics, and from the death of my friend, is that love doesn’t always win, at least not at the level of individuals, but that we can keep working toward a world in which love does win. You know, my trans friend who died last week? The events in Orlando would have infuriated her so much. We had a memorial for her tonight, and someone said it was almost like she was one of the victims of Orlando, what with the two coming so close together.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): Love Always, ALL WAYS WINS

At Motor City Pride, I was singing with Out Loud Chorus, which is one of the choirs I sing in. Why do we sing in choirs? For a lot of reasons, but right up there at the top is for friendship, community, creativity, and challenge. (There are a lot of health benefits, too, by the way. 1 | 2 | 3 | 4) Why do LGBT communities have PRIDE events like Motor City Pride? Some of the same reasons (community, friendship, creativity), and some different (it’s a safe space is probably one of the top). “Safe space” is a concept that has been mentioned an awful lot since the Orlando Massacre. Where I’ve seen it, it’s been mentioned as part of a larger explanation of why and how LGBT folk are not and do not feel safe or included as members of our broader culture.

I remember vividly the first time I felt attracted to another woman. It was in high school. She was an upperclassman — lean, olive-skinned, wearing shorts and a man’s sleeveless undershirt. I felt like someone had zapped me with electricity, skin prickling, mouth hot and dry. And I had absolutely no idea what had just happened, because nothing like this had ever happened to me before. I eventually figured it out, years later. In the meantime, yes, I’d been dating guys, been married and divorced, had a kid. By the time I was divorced, a safe space was the number one thing I wanted most in the world. After I had a kid, I wanted the safest place possible for BOTH of us. Attraction to women was something I felt sometimes, but not very often, and frankly, it wasn’t something I sought out or looked for, and never acted on. A big part of “never acted on” was feeling distinctly unsafe. I’d heard the stories, knew about the things that happened to people who were gay. Some of them were pretty horrible stories. Of course, the decision wasn’t as simple (or as reasoned or conscious or aware), as I’m making it sound here.

When I joined Out Loud Chorus (OLC), decades later, I was firmly wearing my rainbow ALLY button. Quite a number of people in the choir are LGBT allies, so I didn’t feel strange about that. I recently sang in my first concert with OLC, selections from which were what we sang for the crowd at Motor City Pride. The title of the concert was “Destination: Me.” It was about transitions in our lives, how we change, how we choose to change (or not). Parts of it were about transitions experienced by the transgendered. As we prepared for the concert, what I kept noticing over and over was how incredible the people are in the choir. The bravery they take into their everyday lives, almost as if they don’t even think about it, it just IS. The determination and laughter. The unquestioning honesty and acceptance of people the way they are. There was a man at the concert in May who stopped the choir in the hall while we were lining up, and said a bunch of hurtful, almost vaguely threatening things to the “queer choir” as we lined up to go perform. I was taken aback. I’m accustomed to being the ally on the side who intervenes when things like this happen. It’s different when you stand there as one of the people with the invisible target on your chest. There is a very distinct “straight” privilege that belongs right there beside white privilege.

I stopped wearing my rainbow ALLY button recently. Today, I started giving away the rainbow ally buttons I have, because, for me, right now, it feels like a lie, and one that, after Orlando, I can’t bear to live with.

Gay Pride Ally Button//embedr.flickr.com/assets/client-code.js

At the Candlelight Vigil for Peace, one of the phrases that was repeated over and over by speaker after speaker was, “knows what it’s like to be afraid to hold hands in public.” You know, there are health benefits to holding hands, too, of course. Rumor has it that this is maximized when holding hands with a romantic partner. Think about that for a moment. Holding hands makes people feel healthier and happier. But if you are gay, you are probably afraid to, or have been. It was strange for me to listen to this over and over. I’ve held hands with people. Usually, just people who are friends. There was one romantic partner with whom I enjoyed holding hands. I’ve held hands strategically when a man was threatening me or endangering me, and it calmed him to hold hands. I’ve held hands with people when my hands were hot and theirs were cold (or the reverse). I’ve held hands with my kids probably more than any other human beings. But I have never held hands with a woman who had romantic potential for me. And even so, I knew what they were talking about, about being afraid to hold hands, about being afraid to even want to hold hands.

My favorite speaker of the night was Amanda Edmonds, the Ypsilanti mayor, who spoke of putting her wife on a plane to Orlando just a few hours after the shootings. Of worrying. Of crying, and not being able to stop. Of not being able to help the way she longed to help. And of finding different ways to help, but starting here, with the people and places where we already are. There were other great speakers, so many of them. It was so special when Jim Toy said we need to remember not only the victims of Orlando, but all the victims, and to stand in solidarity with not only the gay communities, but other marginalized communities who suffer from isolation and exclusion, and when he explicitly stated the need for us to befriend the Muslim community, the crowd practically roared with support and applause.

There was music. This little light of mine, which is probably sung at many candlelight vigils. We shall overcome. The small choir sang a thoughtful piece, with this wonderful phrase: “There is no map for where we go. There is no map for where we go. We’re not lost, we’re here.”

Not lost

Some folk have focused on the why of the Orlando massacre pretty heavily. Was it ISIS? Was it homophobia? Was it self-hatred? Was it planned? Was it mental illness? I’m not sure if it really matters at this point. Or perhaps there is value in both sides, working from a multiplicity of perspectives toward a variety of solutions? Personally, I think there is significant value in taking a nuanced or multifaceted view, in considering aspects of all of the proposed causes. I’m not sure that it really matters to find a single cause to blame for this. The potential causes proposed are all reasonable considerations, they are all ongoing problems. We should be working to correct and improve all of them, as potential causes of future incidents, at the same time that we work to improve safety and provide healing for the families and communities involved in this and other tragedy.

You see, what happened in Orlando is terrible, but it isn’t just about Orlando. There’s a post going viral on Facebook about all the places you can’t go or can’t be unless you are willing to be murdered. It starts with your home and your office. There are similar posts about getting raped. And if there isn’t one, there should be one about who you aren’t allowed to be if you want to be safe in America, with LGBT, Muslim, disabled right at the top of the list, complete with “a different color” and “from a different place,” ending with just plain “different.” You want to be safe? Find a hole and crawl in, and never come out. You want to be safe? Don’t be different, don’t get sick, don’t get injured, don’t be born to the ‘wrong’ parents or have the ‘wrong’ friends or family. Don’t love, because that’s dangerous.

After 9/11, the local Buddhist temple painted an MLK quote on their walls that resonates with me today: “Hate cannot drive out hate: only love can do that.” The messages written around the chalked flag on the UM Diag today focused largely on similar messages, of love, and its power to heal. There was one in particular that seemed to describe an ideal vision for all the underserved, excluded, wounded, isolated, underprivileged people; be they gay or straight or genderfluid; be they patients or survivors or family or providers. The gist of it was that when all our children love themselves, this won’t happen anymore. For our children to love themselves, we first have to love them, and love each other, and set a good example for how to love. You know what? That may be the hardest thing any of us ever do.

Chalking Our Pride & Sorrow & Strength & Love (Orlando): When ALL our sons and daughters like ourselves, this won't happenChalking Our Pride & Sorrow & Strength & Love (Orlando): Muslims Stand With Orlando
Chalking Our Pride & Sorrow & Strength & Love (Orlando): The Only Thing We Have To Fear Is Fear Itself.Chalking Our Pride & Sorrow & Strength & Love (Orlando): Love Over Fear

Since Katrina, Part Two: How Has Information Access Changed?

Sign: Closed Due to Hurricane Katrina

I mentioned yesterday that Hurricane Katrina changed my life in many ways. Well, my last name might be Swedish, but I’ve never really self-identified as Swedish. My cultural identity has come more from my mother’s side of the family, the Cajun side.

So when Katrina hit, I was riveted; when New Orleans was so damaged I was bereft. I couldn’t find out how the relatives were from the area (they were fine, but I didn’t know). I watched the newscasts almost constantly, for days, until I would shake while watching, couldn’t take it any longer, and felt ashamed that I couldn’t bear to watch. I did what I could from here. I donated money. I helped advertise and promote other Katrina response and recovery fundraising events. That was how I first became part of the A2B3 group which has been so influential in my keeping current about tech trends and tips around the local community and which has informed so many blogposts here. While I’ve been supporting persons with disabilities for most of my career, somehow I hadn’t completely mentally translated that over to the problems they face as individuals and communities in disaster and crisis response, so this (and 9/11) triggered a richer engagement in disaster and crisis preparation and planning, which is also heavily reflected in this blog. And that led to my interest in the SMEM and SMEMchat communities (SMEM = Social Media Emergency Management).

There was one story in particular which I remember vividly from those days which turned into a personal mission. The way I remember it is a little different from how it really happened, but both make good stories. First, the way I tell the story. Even though this isn’t the way it really happened, it could have been.

There was a library school student who was volunteering in the hurricane shelters. I always imagined this being something that happened in the Superdome. Among the evacuees who were not allowed to leave the shelters was a doctor. He was trying to help the other evacuees, but his phone (with his core clinical references) had died, battery had run out of power, and there was no way to recharge it. There were so many people he could help better if he just had a few key resources, but with the libraries under water, loss of power, and being in the shelter, he was dependent on what he remembered. Now, you have to keep in mind, this was two years before the Kindle e-book readers were available, the phones couldn’t hold much, and the batteries were even worse than they are now. What he needed was print, and how on earth was that going to happen?

The student was smart (after all, she WAS a library school student!), and had initiative, so she went and tracked down a listserv for medical librarians, and sent the doctor’s plea for books out to the list. Medical librarians all over the country grabbed books from their weeding piles, and hopped on Amazon to place special rush orders, and had them shipped to … the Dome, of course, right? Mail was delayed (duh). The books finally arrived the day the Superdome was evacuated, and never made it to the doctor. No one knows what actually happened to all those books.

Heartbreaking. Criminal! There has to be a BETTER WAY!! I’ve spent a lot, and I mean A LOT of time brainstorming better ways. I have a vision, a plan in mind, but that’s an entirely different post.

OK, now, what REALLY happened (yeah, I have a vivid imagination). [PS – I’ve been trying to verify this story for a decade, unsuccessfully, and JUST TODAY found the original email to prove it happened.]

Adelaide M. Fletcher: I am an LSU-SLIS student volunteering at a Red Cross Shelter and today I asked one of the Docs there if he needed any reference books. His face lit up and he told me he could really use the Merck Manual and any of the Washington Manuals for Medicine, Pediatrics or Surgery.

I’m sure the situation is similar for other shelters in the Baton Rouge area (there are several), and I would like to collect any of these books and distribute them if possible. If you have any (slightly out of date is okay) or know any medical librarians who would be willing to donate one, please send them to me and I will deliver them to shelters. I can’t speak for shelters outside of the Baton Rouge area, but if I get too many, I’ll try to pass them on through the Red Cross.[Source: MEDLIB-L September 2, 2005]

Adelaide gave her own personal address. People volunteered to send answers to reference questions and look things up. Concern was expressed that mail would be blocked, but then it was verified that her address was in the unscathed zone. The librarians contacted publishers and vendors suggesting they make donations. The books were presumably shipped there, and it is assumed that Adelaide distributed them across multiple shelters. No one ever mentioned the Superdome. No one verified Adelaide’s identity, they just trusted she was who she said she was. As it turns out, she got her MLIS, ended up working in medical libraries, and spent several years continuing the good work she began with this email, working on library recovery from Katrina. From there, she has done a lot of tech geekery in medical libraries, and from there working on community building projects (especially with tech). I already knew she was my kind of person.🙂 And this sure sounds like a happy ending to that part of the story.

But, what about the information resources? Those books and resources the doc wanted and couldn’t get his hands on? What he was asking for was basically textbooks.

The Merck Manual is now online free to the public from the publisher. Even if he had no phone or battery or computer, if anyone else did, they could look things up or call someone who could.

Merck Manual: http://www.merckmanuals.com/professional

The Washington Manuals are trickier. The Washington Manual of Medical Therapeutics is available online and also as an app for your phone. There is a “free” version for the phone which evidently is fairly limited, and then tries to sell you the full version for a goodly chunk of change.

Washington Manual of Medical Therapeutics with Unbound MEDLINE/PubMed (Free) https://itunes.apple.com/us/app/washington-manual-medical/id533185430?mt=8
Top in-app purchases:
The Washington Manual of Medical Therapeutics, 34th Edition ($74.99) https://itunes.apple.com/us/app/washington-manual-medical/id853052080?mt=8

There is also a copy in the Internet Archive which has over 10,000 views, although I’m not entirely certain that it is a legal or legitimate copy. Indeed, I suspect it isn’t. If that link goes dead, then you’ll know it wasn’t, eh? The official legal copy is this from Lippincott Williams and Wilkins which is available in print and online combined for the same price as the app.

Washington Manual of Medical Therapeutics https://www.lww.com/Product/9781451188516

Textbooks are absolutely critical in medical response to disaster and crisis. I’m glad to see that the ones he wanted are now more accessible, even if there still are barriers to access. I’m also glad to see that there are many MORE medical textbooks available online and as apps (I just wish there were more free ones for those times we really need them). Here are a few more (iOS) examples.

The 5-Minute Clinical Consult 2016
Anatomy and Physiology Made Incredibly Easy
CDC Health Information for International Travel 2014 – The Yellow Book
Davis’ Drug Guide
Infectious Disease Compendium, A Persiflager’s Guide
Lange CURRENT Practice Guidelines in Primary Care 2014
mobilePDR (Physicians’ Drug Reference)
Mosby’s Dental Drug Reference
Mosby’s Drug Reference
Oxford Handbook of Clinical Medicine
Taber’s Medical Dictionary
Tarascon Primary Care

There are a lot more, too. You could easily spend hundreds or thousands of dollars stuffing medical textbook apps into your phone or tablet. And the money is a barrier to having them widely available at the point of need when the need strikes. And these assume that the person reading them is a healthcare provider or student. Sometimes, in disasters, that isn’t the case. When that happens you need high quality accurate information that is right there. Ideally, it would be either something already installed or available where you can find it, or easy to get. I’ve been thinking Kindle’s have way better battery life than most phones, so when my mom died and I inherited her Kindle, I stuffed the extra one chock full of free info that I thought would be good for situations like Katrina. I also bought a solar charger and back up battery and cables. Yeah, call me paranoid, but I want info ready to hand.

But what about alternatives to textbooks, like, oh, I don’t know, journals and articles? “The percentage of open access (OA) articles published in biomedicine in 2005 was 27%,” said Matsubayashi et al in their article, Status of Open Access in the Biomedical Field in 2005. In 2012, that percentage was over half of all newly published articles, per Laakso & Björk. That was articles. The number of open access journal titles in 2005 was 1,988, according to Heather Morrison, who tracks these things and makes both her findings and her data open access as well. By 2013, there were 8,817.

Here are some more resources that weren’t available ten years ago but which we have now. If you can’t afford the medical textbooks, then first aid manuals are a great idea. And when you are thinking about what info you need to respond to trauma, military medical manuals could be a great boon. And we have them now. Most of them aren’t useful for the public, but look for the ones on survival techniques and medical topics.

Internet Archive: US Military Manual Collection https://archive.org/details/military-manuals?&sort=-downloads&page=2

For the most important and useful titles, people have put them in a variety of places online. This way if one goes down, there is a backup.

Special Forces Medical Handbook (2001): http://www.nh-tems.com/documents/Manuals/SOF_Medical_Handbook.pdf

Medical Field Manual (1942): http://www.ibiblio.org/hyperwar/USA/ref/FM/PDFs/FM8-5.pdf

Army First Aid Manual (2002): http://armypubs.army.mil/doctrine/DR_pubs/dr_a/pdf/fm4_25x11.pdf

The Army has made available free PDFs of a lot more of their medical manuals. A lot. Like over 50 other medical titles, everything from training to prevention to evacuation, with specialty manuals for dental, veterinary, radiology, and how to handle casualties, stress management. and much more.

U.S. Army: Doctrine and Training Publications, 8_Series_Collection (Medical): http://armypubs.army.mil/doctrine/8_Series_Collection_1.html

So, our information environment isn’t quite “there” yet, but you know, it is a lot better than it was ten years ago, and it is headed in the right direction.

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:

#Katrina
#Katrina10
#Katrina10Years
#SinceKatrina

People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.

STORYTELLING: THEN & NOW | HEALTH & MEDICAL | HISTORY, MUSEUMS, EDUCATION, & LIBRARIES | RESILIENCE, LOSSES, & LESSONS LEARNED | PROGRESS & NEW TOOLS

STORYTELLING: THEN & NOW

HEALTH & MEDICAL

HISTORY, MUSEUMS, EDUCATION, & LIBRARIES

RESILIENCE, LOSSES, & LESSONS LEARNED

PROGRESS & NEW TOOLS

Emerging Tech, Healthcare & Comics for World Book Day #WorldBookDay

Bedroom Books, Unread, Part 1

One book, two books,
Red books, blue books,
Fat books, thin books,
Old books, new books.
This one has a gold leaf spine,
This one sings a little rhyme.
I could read books all the time!
(a Dr. Seuss parody by yours truly)

Let’s just say I sometimes WISH I could read books all the time. And a great deal of my house looks like the photo. For today, World Book Day, I want to just mention a few (a VERY few) books I’ve been reading lately which may be of interest to readers of this blog.

First off, some that connect directly to healthcare social media, emerging technologies, accessibility, disability, and health literacy — some of my favorite topics!


Digital Humanitarians
Digital Humanitarians, by Patrick Meier: http://www.digital-humanitarians.com/

I love the #SMEM community and #SMEMchat. SMEM stands for Social Media Emergency Management. Think of it as how we use social media for disaster and crisis response. I’ve touched on these topics here before, and will again. When I saw that a book had come out specifically on this, I was delighted. And it had even more — the roles of open data, open source software and tools, citizen science, and crowdsourcing. So HUGELY exciting. I couldn’t wait for the library to get a copy, I had to borrow it interlibrary loan. Then I listened to the webinar with Patrick, hosted by NNLM. Then I didn’t want to give back the copy I’d borrowed, so I had to buy a copy. And then I made SURE the library bought a copy. Well worth reading, in case you haven’t guessed.


Digital Outcasts
Digital Outcasts: Moving Technology Forward Without Leaving People Behind, by Kel Smith: http://digital-outcasts.com/

I’ve been raving about Kel Smith’s book, Digital Outcasts. Kel does a brilliant job of not just look backwards at the intersection of disability, accessibility, and technology, but looking forward. He forecasts new technologies arising and some of the new ways in which they will create barriers to access for people. This one the library has, and they have it electronically.


Conquering Concussion
Conquering Concussion: Healing TBI Symptoms With Neurofeedback and Without Drugs, by Mary Lee Esty & C. M. Shifflett: http://conqueringconcussion.net/

Another one I bought for my own collection is Conquering Concussion, which got a rave review from Kirkus and then was listed as one of the top indie published books of 2014. Let’s just say that I have had enough concussions of my own for this to be personally relevant. Then it turned out that the authors are friends of a friend. Small world. Good book.


The Guide to the Future of Medicine: Technology AND The Human Touch
The Guide to the Future of Medicine: Technology AND The Human Touch, by Bertalan Mesko: http://themedicalfuturist.com/

Berci and I have known each other through social media since he was a med student. And now he’s NOT a medical student anymore, is a world recognized expert on emerging technologies and social media use in healthcare, a highly sought after public speaker, and he writes books. This one I bought as an e-book, because I wanted to highlight like crazy, and be able to download all my highlights in a nice tidy lump (something made much easier by reading the book on a Kindle!).


Last but not least, I’m brainstorming how we might make a webcomic about health literacy skills. Sounds like a really boring topic, eh? But the books I’m reading to do research on the idea are anything but boring.

Wrinkle in Time, Graphic Novel
A Wrinkle in Time, a Graphic Novel, by Madeleine L’Engle and Hope Larson: http://www.hopelarson.com/portfolio-item/a-wrinkle-intime/

This one isn’t remotely medical. Instead, it’s a book I’ve read over and over throughout my life, for which I own multiple editions in various formats, and Hope Larson went and turned it into a graphic novel (ie. comic book). You would not believe how much trouble I’ve had wrapping my head around how to tell a story in a comic. It’s not like I don’t read comics. It’s more like, well, brain freeze. This book got me over the first hurdle. Because I know the book so well in other forms, I could more easily understand how the story changed and stayed the same as it morphed into a more visual format.

On Purpose
On Purpose, by Vic Strecher: http://www.dungbeetle.org/

I’ve known Vic Strecher professionally for many years, probably almost as long as I’ve been working here at the University of Michigan. When I heard that Vic’s daughter had died it was like a punch in the gut, even though I’d never met her. I couldn’t imagine. I’m a mom, and there is no more terrifying thought than that something like this might happen to one of my kids. When Vic wrote a comic book about his experience, and how this became, for him, an opportunity for personal growth, I had to get a copy. And this book is what helped me see how a personal story can become a universal story. Seeing how this transformed into a comic book / graphic novel helped me to see opportunities in my own life for stories that could possibly be transformed into comics.

Oh Joy, Sex Toy (review)
Comic Reviews: Oh Joy, Sex Toy (by PF Anderson) http://www.graphicmedicine.org/comic-reviews/oh-joy-sex-toy-2/

Last month I was asked to review a copy of Erika Moen’s new nicer-than-average comic book on sex toys and sex education. You know. Oh Joy, Sex Toy? Trust me, most of the college age folk already know about it.

Erika Moen
Erika Moen

You can read my review for the basics about the book (which is printed with nice ink on absolutely gorgeous paper, if you’re into that sort of thing). For me, the most exciting part of the book was in the appendix, where Erika did a funny little comic about one day in her life, sketching one panel for each hour. LIGHTBULB! Now, I can see how all the pieces fit together: comic formatting, personal experience, and story telling. Next, I’m hoping to find time to actually make one. I’m nervous. Wish me luck! And inspiration!

Ebola and Emerging Technologies

Ebola & Emerging Tech

Ebola & Emerging Tech: http://www.mindmeister.com/485610588/ebola-emerging-tech

Our local Cool Toys Conversations group had asked to have a discussion of emerging technologies and Ebola, and “could we please have it before the holidays when everyone will be traveling?” I had tried to get this up early last week, but life happened, and so it is coming to you now.

When we started looking at this topic I was surprised to find so much! I probably shouldn’t have been — Ebola is big news. It seems as if everyone doing anything in tech and emerging tech is doing something interesting related to Ebola. Well, except Apple. And that surprised me, too. There were so many links, so many topics, I could have EASILY done a month of daily blogposts just on this topic. Once we started, we kept finding more. The collection of links was getting overblown, random, chaotic, confusing. I decided to organize them all in a mindmap, and doing that took a while. Mindmeister kept saying, “Too many topics at one level!” This is why it is broken down into 4 section, but don’t take those sections too seriously. They are more an artifact of the process than seriously meaningful. Each major topic probably has minor topics and links that could easily belong in another section. For that reason, I thought it might be helpful to give an alphabetic list here of what’s included in the mindmap (which is also where you’ll find all the actual links – hint? Click on the little arrows).

I have so many favorite projects and resources I can’t possibly highlight them all. If life and time permit, I’ll try to throw together a slideshow with screenshots of some of them. Just as teasers, here are just a … a smidgen, a teeny tiny sampling. Tim Unwin wrote a great overview of exciting ways in which emerging technologies are being used in the Ebola crisis. Biosensors, wearable tech, open everything, code repositories, data, genetics, DIYbio, mapping and tracking, apps (tons of them), reverse innovation, open source pharma, gaming, cryogenics, … the list goes on and on. You already know how completely enchanted I am with the maker movement right now, and this is no exception. Makers Against Ebola designed flash sensors and proximity alarms to help prevent contamination while working with patients, pull tabs and zipper extenders to make it easier to get in and out of the Personal Protective Environments (which you might recognize better as hazmat suits). The DIY Ebola Challenge came up with a great variety of open source hardware solutions for scientific equipment, in efforts to design a kit they couple bundle and share at point of need. So far they have centrifuges in all sizes, PCR thermocycler, gel electrophoresis, spectrometers, multichannel pipettes, and more. Other folk are using tools like the Raspberry Pi and Beaglebone Black to design inexpensive syringe pumps and diagnostics. And then there’s robots! Robots to decontaminate, robots to intercede between people and create a distance than may contain the disease (like a social firebreak). The ways in which people are using tech to highlight the personal aspect is also awe-inspiring. From citizen journalism to ebola MOOCs to the WAYout Ebola Song, with every social media tool you can name, someone is doing something to try to help share important stories and information. There is a lot more in the mindmap, with links for everything. There’s even a section on open access images about Ebola to use foe teaching, training, and education. Check it out — here’s an outline.

GENERAL

Articles
Collections

PEOPLE DRIVEN

Advocacy
Citizen Science
Citizen Journalism
Collaboration Tech
Communication (Challenges: Misinformation & Hype, Stigma, Weaponized; Solutions: Education & Training, Ebola Information, MOOCs, Information & Health Literacy, Wikipedia
Social Media
Research
Crowdfunding
Crowdsourcing (Challenges)
Makers & DIY
Open (Open Access, Open Images, Open Data, Open Government, Open IBM, Open Source Code Repositories, Open Source Pharma, Open Sources Wearables)
Reverse Innovation

SCIENCE DRIVEN

Arxiv/bioRxiv
Biohacking / DIYbio / SynBio
Data (Data modeling, Data visualization
Open Data
Diagnostics
Genetics
Mapping / Tracking
Nanosilver
NASA

TECH DRIVEN

3D Printing
Apps
Biosensors
Biotech
DARPA
Biocontainment
Cryogenics
Diagnosis
Gaming
Geolocation / Geotagging / GPS
Hackers
IBM
Mobile
Robotics (Asepsis, Telepresence)
Telemedicine
Wearable Tech (Biocontainment, Personal Protective Environments)

Using Twitter to Counteract Hype, Part 2 – Hashtags of the Week (HOTW): (Week of August 11, 2014)

CDC Combats Ebola Hype with Twitter Chat August 8, 2014

Last week, I showed you some of the ways in which the healthcare community is using Twitter to combat hype and misinformation about Ebola. This week there is a more specific example of the same idea — how the Centers for Disease Control scheduled a Twitter chat to answer questions in public for clinicians and healthcare providers about the Ebola outbreak in Africa.

There are some surprises in this collection. Some surprising questions, some surprising answers, and sometimes the surprise is in who is doing the answering. The conversation around bleach is especially interesting. Also, notice who is retweeting what the CDC says. This is a small sampling, but many many people passing along the information, and this is important for spreading the word.

THANK YOU, CDC

EXTRAS


First posted the the THL blog: http://thlibrary.wordpress.com/2014/08/11/using-twitter-to-counteract-hype-part-2-hashtags-of-the-week-hotw-week-of-august-11-2014/

Using Twitter to Counteract Hype (#Ebola) – Hashtags of the Week (HOTW): (Week of August 4, 2014)

Ebola virionsEbola virus particles
From Wikimedia Commons: Ebola virions; Ebola virus particles

In the last week, I don’t think there has been a moment when the trending hashtags display on my Twitter page has NOT listed “Ebola.” This is in part due to the attention resulting from two American healthcare providers having been infected with the Ebola virus while providing care, and partly also from the newest update from WHO on the outbreak in West Africa, which lists over 1500 cases and almost 900 deaths. People are panicking, and the press is going wild. This is a great opportunity to show how healthcare professionals and the broader healthcare Twitter community is using the #Ebola hashtag to help alleviate concerns and moderate anxiety, by providing informed balanced reliable information. Each of the tweets included in this post is considered a popular tweet which has already been retweeted several times and/or favorited by people reading the tweet. If you want to help calm things down, you might consider retweeting or sharing some of these popular tweets on the topic.

lores Ebola Zaire CDC Photo
From Wikimedia Commons: Ebola case #3, 1976


Reposted from THL Blog: http://thlibrary.wordpress.com/2014/08/04/using-twitter-to-counteract-hype-ebola-hashtags-of-the-week-hotw-week-of-august-4-2014/