Tag Archives: crisis response

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

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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!

You Can Help! Crowdsourcing Disaster Planning & Response Resources for #SMEM

Translate-a-Bowl

I can’t tell you how EXCITED I am about this project! Disaster and crisis response planning is one of my, well, hobby isn’t the right word, so let’s say special areas of interest. I like languages, and I love accessibility. I love advocacy and doing-good-for-others projects and activities. You all know how engaged I am with social media. I go giddy over citizen science and crowdsourcing and collaboration technologies. Then, riding the bus to work a couple days ago, I was chatting with Dave Malicke from Open Michigan, and he mentioned they are (wait for it):
CROWDSOURCING
TRANSLATION
of a video series in YOUTUBE
developed as part of a global health COLLABORATION
on DISASTER management and response and EMERGENCY planning!!

Open Michigan: Emergency Planning Lecture Videos -HEALTH Alliance: Captions

Now, really, how could I not be excited?

Even better, they are kicking off with a grand event combining both a real life and virtual meet-up (with FOOD for the face-to-face part). They are calling this the Translate-a-Bowl, and it starts today and runs through the weekend. But don’t stop if you are busy all of Superbowl weekend, because the need for translators and proofing will continue until it is all done!

I am remembering when the tsunami hit Japan, and people had found emergency hospital evacuation procedures, and needed them urgently translated RUSH into Japanese. These videos were developed for East Africa in collaboration with a group of African and American universities. It is really an impressive collaboration. If you can’t help, the project is still fascinating, especially for how it is organization and developed. If you know English and any other language, take a further look.

“Our priority languages are French, Portuguese (Brazil), Spanish, and Swahili, but we encourage all languages. (We have computer-generated translations in those 4, plus 31 others.)”

About the project:
Help us translate educational videos about microbiology and disaster management from Michigan, Ghana, and East Africa: https://open.umich.edu/blog/2013/01/28/help-us-translate-health-oer-videos/

Register for the Bowl:

Translate-A-Bowl:
https://sites.google.com/a/umich.edu/translate-a-bowl-mmxiii/

Here is the playlist of the disaster management videos:


Emergency Planning Lecture Videos -HEALTH Alliance: Captions: http://www.youtube.com/playlist?list=PLJhG_d-Sp_JFQsyGwLFjr6ojSqWbhVTaU

Remember, they are also doing other topics, like microbiology, it is just that I am so excited about the disaster videos.

Rapid Responses: How Do We Prepare for Crises & Disasters?

SL - Wolverine: UMMS Elective, Play2Train

Last Thursday, the medical librarians on Twitter (#medlibs) had a chat about medical libraries and librarians and how they deal with crises and disasters, both in the idea of preparing as well as responding. Last night, the Healthcare Social Media community on Twitter had a very similar conversation, focusing more on possibilities and best practices for using social media effectively in crisis and disaster situations. The two of these, back to back, were an incredible experience.

I am still trying to wrap my brain around the scope and highlights of the two conversations, and will just do a bit here briefly, then hope that you will go explore the chatlogs on your own. Starting there, here are links for the chatlogs.

#Medlibs: Transcript July 19, 2-3pm ET

#HCSM: Transcript July 22, 9-10pm ET

Background questions for the #medlibs chat were, “What if your library is effected by a disaster? What are the responsibilities of medical libraries during community crises? How can libraries prepare? How can medical librarians as individuals prepare?”

Topics for the #hcsm chat were, “Topic 1: What do we do with social media in a healthcare crisis? Can patients in emergency situations be e-patients? If so, how do we help them? Topic 2: What are emergency best practices for social media?”

The librarians’ discussion ranged from personal preparedness to professional, sharing tools and strategies such as having “buddy libraries” to provide content when your library is out of commission. One concept discussed quite a bit was the idea of creating an open access open source library of information most likely to be needed in a crisis or emergency response situation. Another was the idea of building strong relationships and partnerships, policies and procedures for crisis response within our local communities before they become necessary.

The healthcare social media community was very intrigued by the #SMEM chats on social media for emergency management. The #SMEM group has, over the past few years, had many conversations about the same topics of how to use social media effectively in a crisis, and have generated some best practices, tested them, revised them, and continue to evolve these. The briefest basic concept was, first, have a plan in place before it is needed, and second, make sure you as individuals know the plan and have an idea of the best practices for tweeting or using hashtags during a disaster.

I need to just insert a brief sidebar about that last bit, just so folks have seen it. The best practices are changing and will likely to continue to change, but if you don’t remember anything else from this post, remember in a crisis to tweet like this:

#crisis (ie. #haiti or #aurora) #name Name of Person #need What they need #loc Where they are

There are all kinds of recommended hashtags, but assuming folk who are not trained first responders may not remember them all, just remember #Crisis/#Name/Need/#Loc. Here is a screenshot from the Tweak the Tweet project that gives more examples. [historical information on the project]

Tweak the Tweet

Many wonderful links were shared in both chats. If you are interested in this topic, you might also be interested in the #SMEM chat on Fridays at 12:30pm Eastern Time.

(NOTE: The image used at the head of this post is from a medical school first responder training exercise held in the Play2Train area of Second Life, a 3d online virtual world.)