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.
David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.
David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”
To continue the series on “what I did for #ADA25,” I’d like to talk about the very exciting event here in town last week, in which Ann Arbor sets the stage for a national high speed rail system, and access for persons with disability is at the core of making this possible.
AMTRAK
The event was the ribbon cutting for the new disability-accessible platform at the Ann Arbor Amtrak station.
The event started out with the mayor, Chris Taylor, describing the importance of the University of Michigan Health System and hospitals in providing advanced health care to the residents of the State of Michigan, and how critical accessible rail transport is for supporting this.
Lt. Governor Brian Calley noted, “Acceptance & awareness are important, but inclusion is a game changer.”
Richard Bernstein, Judge of the Michigan Supreme Court, waxed eloquent, clearly joyful and delighted with this innovation. You can hear his full remarks on Soundcloud.
Joe McHugh (Amtrak’s Senior Vice President) described this as “the flagship of our new technology,” continuing with the vision and possibilities that would come from this.
As with all ribbon-cutting events, the actual story started long long before. Or stories, I should say. This event sprang from the intersection of many stories, many people’s experiences. There are the local folk who fought for a better way to take the train, and helped make people aware of the reasons why it should start HERE. There were wheelchair passengers who complained about being put on a jack, hoisted into mid-air, and left dangling in the rain while the station staff try to get the logistics sorted out. There were the Amtrak staff who helped people with luggage, moms with strollers, elderly folk climbing the narrow stairs into or out of the Amtrak cars.
The story that resonated most powerfully with me was told by Richard Devylder, the U.S. DOT’s Senior Advisor for Accessible Transportation.
Richard was born without arms or legs. The combination of his experience, his intelligence, his connections with the community of persons with disabilities all help to inform his position and influence change. And when the opportunity presents itself, he absolutely will go for the brass ring.
That’s kind of what happened one day a few years ago. Richard described a room full of transportation higher ups. He asked, “Well, do you want to see high speed rail in the United States?” Yes, yes, yes, they all did. The next thing Richard said? “Then you have to find a way to let people like me board the train in less than 15 minutes.” BOOM.
That was one story. He had another good one. Richard described one day when he was trying to get on the train, and a ramp had been set up to allow him to board. But he couldn’t even get on the ramp because it was so crowded with people. Elderly with walkers. Parents with strollers. People with heavy rolling bags of luggage. Part of him thought, “Hey, why are all these people blocking my ramp?” Immediately he realized it is because all of them also needed a ramp, and the one provided for him was the only one there. BOOM #2!
We need ramps for boarding trains absolutely as much as we need curb cuts. The next ADA25 story I’ll be telling is about a group of people in virtual worlds. They were pretty impressed when I told them about this new Amtrak platform. Then they asked, “But why did it take 25 years? And why is there only ONE in the entire United States?” More on that in the next post.
The actual ribbon cutting, with Gary Talbot as the honored local person who pushed the hardest to make this happen.
Yesterday was the 25th anniversary of the signing of the American with Disabilities Act. I want to describe three technology events that happened around the theme of celebrating this milestone! These three stories include high speed rail, robots, assistive communication devices, virtual worlds, web accessibility, exoskeletons, 3d printing, and more. That’s the tech. But the touch is just as important, if not more so, and the question of what’s left that needs doing is the idea of defining and meeting our targets. Let’s get started.
WHITE HOUSE
First, President Obama celebrated, of course, with many people. One was Haben Girma, the first deaf-blind graduate of the Harvard Law School. The President would type words to talk with her, and she would listen with her hands on a machine that translated the typing into Braille. “I couldn’t type a hug,” he said.
Towards the end of his remarks, President Obama described the how his father-in-law’s experience with multiple sclerosis helped to shape his passion for reducing barriers for persons with disabilities, and his awareness of how access to necessary resources can help people grow into their potential, and how that helps all of us.
“And just an aside on this, for a long time, he would not get a motorized wheelchair because he had gotten this disability at a time when they weren’t available and it was expensive, and they weren’t wealthy, and insurance didn’t always cover it. And it just gave you a sense of — Michelle and I would talk sometimes about how much more he could have done, how much more he could have seen — as wonderful as a dad as he was, and as wonderful as a coworker as he was, he was very cautious about what he could and couldn’t do — not because he couldn’t do it, but because he didn’t want to inconvenience his family and he didn’t want to be seen as somehow holding things up.” Remarks by the President on The Americans With Disabilities Act https://www.whitehouse.gov/the-press-office/2015/07/20/remarks-president-americans-disabilities-act
