I truly cannot express how delighted and proud I am of the University of Michigan, their Council for Disability Concerns, and especially my dear colleague Anna Schnitzer, for their annual hosting of a rich series of events focused on issues at the intersection of disability and ability. This year, the special topic of focus is: “Stigma, Stereotypes, and Bullying.” I will be hosting one of the events (more on that shortly), but I wanted first to introduce the entire series of events, and highlight resources from past events and one of the early events in this year’s series.
Now that you know how to find the rest of the events, here are the highlights from one earlier this week, a very passionate and information-rich presentation on the role of Stigma in Muslim Mental-Health, and how that has very real impacts on all of America.
There has been a lot of science communication (#SciComm) action on Twitter recently centering around what does life look like for real scientists. I have a head start on this because when I was a little tyke, my dad dragged me into the lab with him and told me things like to watch the door of the High Wind Velocity Testing Lab so that the tornado didn’t get out while he was working on his mass spectrometer lithium sample testing. What can I say? I was gullible. So all those fun lifestyle pithy tweets will come in a later post, but for today, here is proof of presence of laboratories on Twitter. For the record, there are a lot more of these in each category, because Twitter’s search limits don’t return complete results for matches to the search criteria. Basically, that means I found a lot of these by browsing, when I should have been able to find them through search. I hope this is a useful resource. Enjoy!
There were an incredible number of excellent and insightful statements. I’m hoping later for a full transcript of the remarks! Meanwhile, here is a Storify of reactions to the webcast as it occurred, with what people watching captured as most important.
Yesterday, I was walking towards the Diag at the heart of the University of Michigan’s Ann Arbor campus. I noticed some chalk drawings on the sidewalk, and took pictures. I noticed some carving on a treetrunk and took pictures.
And then I noticed all the backpacks. Everywhere. And all the students standing, bending, crouching to look at the backpacks more closely. I stopped. I bent over. I read the stories. Each backpack represents one person who died of suicide. Most of the backpacks have their story attached to it, with farewells from grieving loved ones. Some are the actual backpack the person used in their own student experience.
I walked around the collection of backpacks slowly. I snapped photos. I finished looking at one section of the backpacks and thought, WOW. Then I started walking again. And then I stopped again. Because it wasn’t just one section. The backpacks were everywhere. I kept looking, and watching, and taking pics, but did not even try to get pictures of ALL of the backpacks.
As I finally straightened up and was about to leave, I heard a woman’s voice behind me, saying "Hurry up. I don’t want to see this. I know, it’s probably a fact of life, but … " It was a woman who is probably my age, certainly past student age, but dressed like a student in tight leggings and a tshirt, with the arms of a light sweater tied around her shoulders. She and her companion sped up, almost sprinting past the display, her dyed-blonde ponytail bouncing in the sunlight of the beautiful day.
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.
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.
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.
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.
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.
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.
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.
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.
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:
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.
There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.
* THE BLOGGESS
#TheWorstPartOfDepressionIs the waiting. Waiting inside my broken head for it to go away and not knowing if it will outlast me.
