A Tack Board of Tags (HOTW July 19, 2015)

There have been some fantastic conversations on Twitter this week, on a huge diversity of topics and organized around some intriguing hashtags. I was personally involved with the Summit for the Mayo Clinic Center for Social Media (#MCCSM) and the local systematic review training course (UMTHLSysRev). It was a series of happy coincidences that led me to the events Astrobiology Science Conference 2015 (#AbSciCon); Inspirefest 2015, the future of science, technology, engineering, and mathematics with new perspectives on innovation, leadership and success (#inspirefest2015); and International Association for Suicide Prevention (#IASP2015). I was surprised to find two very relevant Twitter chats that were new to me: hereditary cancer chat (#hcchat) and the Internet of Things chat (#IoTchat). Last but far from least, the nursing-inspired #WhyWeDoResearch tag is a very motiving and inspiring meme to explore. I’ll put just a few examples of each below, hoping to intrigue you enough to go look at these yourself.



Mayo Clinic Center for Social Media | #MCCSM (#mccsm archive)



Systematic Reviews Workshop: Opportunities for Librarians |
#umthlsysrev (#umthlsysrev archive)



Astrobiology Science Conference 2015 | #AbSciCon



Inspirefest | #inspirefest2015



28th World Congress of the International Association for Suicide Prevention, Montreal, 2015 | #IASP2015 (#IASP2015 archive)



Hereditary Cancer Chat #HCchat
(#HCchat archive)



#IoTChat: Internet of Things Twittersphere Chats Evolve | #IoTchat



Why We Do Research Campaign (Weebly sites blocked in UM hospitals) [Campaign video 1; campaign video 2] | #WhyWeDoResearch (#WhyWeDoResearch archive)

La Traviata: Turning Old Pop Culture Into New Pop Culture to Fight Stigma

Pic of the day - Detroit Opera House

Only old fogies go to the opera, right? And young guys trying to impress a girl with how intelligent and posh they are. Right? And why? Because it’s booooooring, and not relevant, unless you study music. Or history. Or music history. Or the Looney Tunes. Right?

Well, do I have news for you. The Metropolitan Opera has gone international with their Live in HD series show in movie theaters, and they are including famous Tony award winning directors and Broadway actors in some of the shows. Professional opera has been trying to recruit a new audience through reaching out into new spaces, and re-interpreting shows in modern scenarios, like the Las Vega “Rat Pack” version of Rigoletto or the 50s diner version of Cosi Fan Tutti, or even the Star Trek version of “Abduction from the Seraglio.” I know of classic operas with new translations of the libretto, but they keep the same plotline and story. Of course, there are also new operas, new approaches to what is an opera, rock operas, heavy metal operas and even a country-western-horror mashup opera.

As far as I know, no one has, however, taken this as far as the Arbor Opera Theater did last week with their new interpretation of La Traviata.

La Traviata

La Traviata. Postcard image courtesy of NNDC.

“Lydia Mendelssohn Theatre, June 11-14, 2015. La Traviata, a new English adaptation created with the National Network of Depression Centers to address the stigma surrounding mental illness.”

Ah, now it makes sense. I bet some of you were wondering why on earth I was talking about opera, when I usually talk about healthcare and/or technology. This is why. (Well, except, I do love opera, in case you haven’t guessed.) The best operas have traditionally taken on difficult and edgy topics, challenged assumptions and cultural norms, poked ridicule at the establishment, and generally done what popular culture does best: Explore, question, and hopefully transform the present. La Traviata, when it was first written, told the story of bias against women of “ill-repute,” a.k.a. courtesans or prostitutes. The rumor is that Verdi had his own personal reasons ( special friend, perhaps) for suggesting that people should be a bit more tolerant, and trying to foster a sense of compassion to counter the stigma. This brought us La Traviata, and generations of viewers who weep at the end as the “courtesan with a heart of gold” fails to survive largely due to the classic public health indicators of low socioeconomic status and lack of access to healthcare. Stigma of all sorts is a contributing public health issue, with over twelve THOUSAND articles on the topic in MEDLINE. Almost half of those relate directly to mental health or mental illness, and the rest mostly connect tangentially, through sexual preference, victim status or survivorship, gender identity, and disease diagnosis status (HIV, cancer, leprosy, and more).

This new and revised vision of La Traviata kept the wonderful music, the names of some of the characters, and the stigma, but changed the plot and storyline and the source of the stigma. The star of the new La Traviata remains Violetta, but now Violetta suffers from mental illness. Violetta is a beautiful young woman, self-medicating in a struggle to manage her symptoms, without her friends realizing that it is an illness and could be treated. As with so many in real life who struggle to alleviate their own misery without understanding the root cause, her strategies for self-medication complicate the challenges instead of helping. Those familiar with the story of La Traviata know to expect a death scene at the end, but our Violetta dies not of tuberculosis and poverty, but misunderstanding and a drug overdose.

La Traviata Death Scene

La Traviata Death Scene, photo courtesy of Amanda Sullivan

When I first heard about this production, the vision of interpreting the story around depression and bipolar and stigma, actually partnering with the National Network of Depression Centers, I could not have been more excited. I was thrilled with the concept, and could only wait to see the show because there were no previews online! Not everyone felt the way I did. At the performance, I overheard people expressing some reluctance. Would it be the show that they loved already? How could this work? Did it really make sense to make this big of a change? At the first intermission, some were still hesitant, but by the final intermission the staunchest resistance near me had converted to, “I’m surprised! This really works!”

It did, and does succeed as a story. Arbor Opera Theater is not the Lyric or the Met. We don’t have the star performers, the grand sets, the enormous stage. Despite that, I found myself lost in the story and music. The New Orleans setting was a perfect choice for the context of the story. The sex scenes were dynamic enough to make me feel like a voyeur. Several audience members commented on the strong performance by Augustin (Drake Dantzler) as Violetta’s youthful true love. The arguments with her lover’s father, Senator Germont (Evan Brummel, who acts brilliantly as well as beautifully sculpting language with the musical notes), successfully portrayed him with rich subtlety as a villain operating from the best of intentions. People near me said, “I could have done the same thing,” and “I know parents like that.” His repentance at the end, in the dream sequence, made me wish it was not a dream. When the final scene approached, my reaction was, “Oh, no! She’s so tiny, she doesn’t have the body mass to offset the meds!” I had willingly suspended disbelief, and bought into the performance. A part of me believed that Violetta (Kacey Cardin) was the tiny, sexy, blonde woman with the big voice, tough and fragile at the same time.

La Traviata - Full Cast

La Traviata, Cast, photo courtesy of Amanda Sullivan

The actual singing soared, and for the most part the libretto succeeded in both revealing the story and supporting the singers. There were a few rough spots in the libretto that didn’t quite lay well for the voices and which were jarring to the audience, disrupting the flow of the story. Perhaps a bit of polish, a touch more lyricism, and a bit of rhyme and poetry would address that? Portions of the libretto seemed appropriate for the story, but inappropriate for the character actually singing them. I’d want to touch base with a greater variety of audience members to test out how it worked. That there were moments where the language was a distraction from the story was made evident in audience comments in the hallway. “What does that word even mean?” “Did she have to use that kind of language?” Perhaps that was just the older portion of the crowd? I’m not sure. Perhaps I’m just nitpicking.

Ultimately, I came away wishing strongly to see this performed over and over again, in many interpretations, in many theaters. I want to see this performed by the Met Opera in their Live in HD series. I want to take the train to Chicago to see it at the Lyric. I am deeply grateful to have overheard one of the cameramen at the Saturday performance say that there were plans for this La Traviata to be broadcast on Detroit Public Television in the future. I hope desperately that this means it will also be viewable online, because I want to go out to all my online healthcare communities and get people to watch it, or at least watch excerpts and highlights. I want to spread the word, and engage a much broader audience around this issue, stigma, and this story.

I also found myself asking, why don’t we do this for other important health care and social advocacy stories? Can we take what Shawn McDonald has done with La Traviata as a model to explore contemporary issues? Take classic operas, plays, perhaps Shakespeare, and more. Make them modern and relevant to a contemporary audience, give them new life, and at the same time support the important causes and issues of our day, the challenges and heartaches that shape our society. It would be a far lesser shift to perhaps have Violetta dying of cancer. Could King Lear be rewritten to explore workplace social dynamics, and the need for positive organizational dynamics? What about a new work taking David Copperfield and setting it in India or China? Could Ophelia in Hamlet be recovering from the trauma of clitoridectomy? Rewrite Figaro as casting couch dynamics in Hollywood. Would it be possible to mashup Handel’s Orlando with Virginia Woolf’s surreal Orlando to explore transgendered life? In Rigoletto, instead of being a hunchback, could Triboulet be a person with facial difference? Take L’Elisir d’Amore and rewrite it as a vaccine story. The possibilities are endless.

After the exhilaration and emotional roller coaster of watching the AOT La Traviata Saturday night, I came home and walked the dog. It was dark. The streets were empty. There was a hollowness in the silence that seemed to echo louder because of where I’d been so recently. It felt … appropriate. Let Violetta’s death, the real Violettas of our world, have meaning. Let us move from these hollow spaces to open spaces that show stigma for what it really is.

After a sad opera


Update June 18, 2015: Corrected the name of AOT from Ann Arbor Opera Theater to Arbor Opera Theater. Corrected attribution of images from NNDC to Amanda Sullivan.

What Patients Think About Clinical Trials, Take 2 (#bioethx)

At the Doctor's Office: Push For Help

ADDENDUM

Within minutes after the previous post went live, I was contacted on Twitter by another patient advocate, Willow, also known as Serious Skeptic. She* expressed another wide area of patient concerns about clinical trials, ones that were new to me, and which deserve representation in this post, even if they aren’t from the official public #PatientChat event. Because Willow has a locked account, and I respect that, I asked her permission to share the links and the essence of some of her private tweets. The following is posted with her consent, but represents my words and distillation of what I learned from her.

Willow was concerned about ethical breaches in clinical trials, especially:
– trials that are designed specifically to promote use of a drug (marketing);
– trials that suppress undesired findings or which fail to publish or share negative findings;
– trials that don’t share their data;
– trials that don’t make relevant or useful findings available to all trial participants.

I had the impression she’d kind of like the research studies to also notify trial participants of publications that do result from their participation. I know, I do, myself, and being a medical librarian, I take notes on my research participation, the names of studies, the names of the PI, and I stalk their publications for years until I see the research in which I participated. I often ask to be alerted, and usually received some sort of polite demurral, and nothing else. I wish they had an email list I could just subscribe to for alerts from their lab.

Anyway, when Willow described clinical trials that are actually marketing ruses, my reaction was, “Whoa! Not really? Doesn’t the IRB process protect against that?” Evidently not. The concept she was describing most is called seeding trials. Here are some links she shared with me, or quotes and/or resources from those articles.


A physician is invited by a pharmaceutical company to take part in a study involving an FDA-approved drug. The physician’s responsibilities entail prescribing the drug for patients and then completing three questionnaires about each patient’s experience with the drug. The questionnaires are quite short and will take about 20 minutes each to complete. The sponsor will pay $1,500 for each completed questionnaire. The physician is very interested in participating because it looks like a great way to increase practice revenues.

Rusczek JP, Rusczek AM. Fraud and Abuse in Clinical Research: Three Case Studies. ABA Health eSource June 2010 6(10). American Bar Association. http://www.americanbar.org/content/newsletter/publications/aba_health_esource_home/Rusczek.html
– Research Involving Non-Employed Physician Investigators
– Marketing Disguised as Research
– Double Billing

The public has lacked convincing documentary evidence of a long-suspected drug company practice: promoting a new drug by sponsoring a randomized trial in which participating physicians use the drug as they follow the trial protocol. This practice—a seeding trial—is marketing in the guise of science. The apparent purpose is to test a hypothesis. The true purpose is to get physicians in the habit of prescribing a new drug.

Sox HC. Seeding Trials: Just Say “No.” Ann Intern Med. 2008;149(4):279-280. doi:10.7326/0003-4819-149-4-200808190-00012 http://annals.org/article.aspx?articleid=742309

Seeding trials are designed to appear as if they answer a scientific question but primarily fulfill marketing objectives. Kessler and colleagues (3) portrayed seeding trials as “attempts to entice doctors to prescribe a new drug being marketed by the company” while the company puts its product in the hands of practicing physicians, hoping that the experience of treating patients with the study drug and a pleasant, even profitable, interaction with the company will result in more loyal physicians who prescribe the drug (4).

Hill KP, Ross JS, Egilman DS, Krumholz HM. The ADVANTAGE Seeding Trial: A Review of Internal Documents. Ann Intern Med. 2008;149:251-258. https://www.leg.bc.ca/cmt/39thparl/session-4/health/submissions/Hill_The_Advantage_Seeding_Trial_2008.pdf

“Merck’s marketing division handled both the scientific and the marketing data, including collection, analysis, and dissemination; and Merck hid the marketing nature of the trial from participants, physician investigators, and institutional review board members.”

Keim B. Merck Vioxx Study Disguised Marketing as Science. Wired 08.19.08 1:22 PM. http://www.wired.com/2008/08/merck-vioxx-stu/

Merck minimized the true risks of Vioxx (Apr 17, 2008) https://www.youtube.com/watch?v=PQYxZSUDnqI

The maker of Neurontin disguised an effort to promote the anti-seizure drug to physicians as a clinical trial and failed to inform involved physicians and patients, according to a new analysis published Monday in the Archives of Internal Medicine journal.

Girion L. Neurontin study was a sham designed to boost drug sales, researchers say in medical journal. Los Angeles Times June 27, 2011. http://articles.latimes.com/2011/jun/27/news/la-heb-neuronton-seeding-trial-20110627

Seeding trials are an unethical, dangerous way to market a product. The IRB needs to become a better-equipped committee that can identify seeding trial practices from honest clinical trials, and the FDA needs to demand more transparency from companies sponsoring clinical trials, to better protect public health and the integrity of clinical research.

Varga M. Are Seeding Trials Ethical? Kulkarni Law Firm Blog June 11, 2012 11:11. https://www.conformlaw.com/blog/are-seeding-trials-ethical/

Recommended Principles to Guide Academy-Industry Relationships. American Association of University Professors. University of Illinois Press, Jan 25, 2014. See the endnotes on pages 341-2. https://books.google.com/books?id=lFSNAgAAQBAJ&pg=PA341&lpg=PA341&dq=drug+seeding+trials&source=bl&ots=AEZ1Xa7NUS&sig=W_nCm_h2w7Uhtf5tWd4V6sf5ggI&hl=en&sa=X&ved=0CDIQ6AEwAzgeahUKEwjw9JWVyovGAhWjWowKHTvgAJQ#v=onepage&q=drug%20seeding%20trials&f=false


Because of the risks and distrust generated by the practice of seeding trials, Willow suggested that it might be wiser to wait to test new meds on your own body until they’ve been out for a few years, unless you are so ill that you have no alternatives. Now, of course, if everyone does that, then there are NO NEW DRUGS because we can’t test them! And that is a situation in which we all lose.

My own choices? I take risks that I won’t ask others to take. I try to be informed about the risks I take. When I participate in a research study, I ask a lot of questions, and I pay very close attention to my body. If my canary-in-the-mine body complains, I withdraw from the study. Well, I would. So far, I’ve never actually needed to withdraw from a research study, but I have ceased taking actual FDA-approved meds prescribed for me that my body couldn’t handle. I’m hoping that the #bioethx chat group will pick up on this topic next, and hoping they can find an invited speaker to talk about what IRB committees have done and are doing to try to address this, to build confidence in medical research.


* I am assuming Willow is a she because I interpret the name Willow as a female name. I have no knowledge or confirmation of that, and it isn’t any of my business anyway. I am using the female pronoun to describe her simply for convenience, and intend no disrespect.


ADDENDUM TWO, June 13

A few clarifications and corrections from the ever thoughtful Willow.

Willow feels my concern about limiting drug discovery isn’t valid, since seeding trial occur for drugs that are already patented. My concern is that fear of seeding trials will scare some participants off of drug trials entirely. Drug discovery trials are legitimate, but the problem remains that it can be difficult to distinguish discovery trials from seeding trials, since the physicians and patients are both kept in the dark by the drug manufacturers.

What Patients Think about Clinical Trial Engagement (#patientchat)

At the Doctor's Office

I had really wanted to participate in this Twitter chat today (#patientchat), on how patients find clinical trials, decide to engage with them, what resources they use, their expectations, and their concerns. I missed the chat, but it is archived in Symplur, so I was able to scroll through, search, dig, prowl around, and find my favorite bits. Since I went through all of that, I thought I’d share it. I’d recommend reading more deeply in the transcript for anyone in clinical trial research or recruitment, patients with basically any kind of diagnosis (as Mighty Casey eloquently said), people interested in translational medicine (where patients play a crucial role), as well as clinicians. Evidently, patients consider clinical trial recommendation from the primary care clinicians to be an obligation, not an optional part of providing care. Who knew? I bet we could automate relevant clinical trial notifications in EHR and as part of clinic visit prep. Why not? Explore below and see what other surprises and creative nuggets appear.

Introduction to Usability & Accessibility for Medical Librarians

Last week’s Twitter chat for medical librarians (#medlibs) was on topics near and dear to my heart: accessibility and usability. I (a) was impressed by the caliber of the conversation, and (b) wanted to collect the good links and ideas in a place that would make it easy to find for other medical librarians. So, here is a Storify. I particularly recommend the links.

Our Cool Toys Group as a Community of Practice for Emerging Technologies (And What’s Next!)

It’s been seven years. Can you believe that? SEVEN YEARS! Cool Toys Conversations is definitely growing up, and it was time to tell folk so. I presented a poster on our group at the Medical Library Association Annual Meeting in Austin last month. I was swamped the entire poster session. Lots of questions, lots of great conversations. I was surprised by the parts that other folk found surprising.

What seemed to be the most important finding to others was the idea that to connect with a new audience that aren’t aware of what the library has to offer, it may be necessary to make yourself highly discoverable outside of your normal channels. This means social media, blogging, publishing, attending sessions on their topics, live-tweeting, and otherwise getting your name associated with that topic in a variety of locations. That way, while they might not think to look to the library for assistance, when they go do a Google search for people working in this area, you pop up. By being discoverable nationally, you are more likely to connect with your target audience in your home institution. It sounds counter-intuitive, but there were a lot of library directors stopping by, asking me about this part of it, and then sending their staff to talk with me. Very interesting.

The other logical-in-hindsight part that was really important was the value to the community of having a broad open-door policy with a broad scope of topics, combined with loose partnerships with other campus groups that share interests. It is helpful in building community to have a place where people can come and catch up beyond the narrow focus. For example, my official focus is on emerging technologies for healthcare. We have meetings that talk about those, but we don’t limit it to just those. We also look at technologies that support teaching, research, workflow, personal productivity, marketing and communication, and more. Ultimately, these “off-topic” themes connect back. A session on personal organization tools may attract a clinician supporting persons with executive function disorder. A session on wearable technologies for fitness draws in a researcher working on best practices for sleep. A session on iphone apps to make comics brings in nursing staff designing training materials. Conversations around social media best practices attract attention from hospital researchers wanting to market clinical trials. So, we keep the meetings open to anyone on campus of any level, and even people from the local community. We let the people who show up shape the topics of interest to them, and even though they may not be folk working in healthcare, it seems to work out to support a diversity of communities.

Recently, we had our first Cool Toys Conversations group meeting since my return, and we brainstormed ideas and topics for the coming year. Here is an alphabetical list of what we came up with.

* DIY Cognitive Rehab & Alzheimer’s ‘Prevention’ (Brain Training Apps)
* DIY Comics for Education & Outreach (Tools, Tips, & Fun)
* Design Thinking Walk Through
* The Home Front: Emerging Tech at UM
* Make Health
* New Tech & Student Retention (DIY U, Credentialing, DIY Badging)
* Online Identity Management (Privacy, Transparency, Safety, and What Else?)
* Reverse Innovation (Rural, Underserved, Global, Sustainable)
* Study Apps, Part 1 (Writing, notetaking/sharing, speed reading/writing, assignment management, time management, flash cards)
* Study Apps, Part 2 (Text2Speech, Disabilities, ESL students)
* Trends in Multimedia Consumption & Production, From Youtube to Stage-It to Archive.org

If you have other ideas, now is the time to share them! We are also talking about partnering on some of these with the Mobile Users Group, Health Design By Us, Global Health, Web Accessibility Working Group, and other campus groups. There is even the possibility that we might Skype in some experts from other schools. And then, in December we’ll have a bit of a party instead of a meeting. Don’t you wish you were here?

The other very interesting idea that was proposed was to repurpose the Cool Toys blog or create some other related online space as a way for sharing information about emerging technologies, resources, events, activities, projects, and so forth across the entire campus. This is something that would have to be brought up to other groups, but it’s definitely an interesting idea!

Links shared during the meeting

Companion – Your Personal Safety Service http://companionapp.io/
Cool Toys U: Calendar: https://cooltoysu.wordpress.com/calendars/
ETechLib: Tools for Learning: Flashcards? Really? https://etechlib.wordpress.com/2009/10/06/tools-for-learning-flashcards-really/
ETechLib: Tools for Learning: Flashcards Done Right, Video Tools, & Augmented Reality https://etechlib.wordpress.com/2009/10/14/tools-for-learning-flashcards-done-right-video-tools-augmented-reality/
Evernote https://evernote.com/pricing/
HealthDesignByUs http://www.healthdesignby.us/
Qualtrics: File Upload: http://www.qualtrics.com/university/researchsuite/basic-building/editing-questions/question-types-guide/file-upload/
Read&Write GOLD: http://www.texthelp.com/north-america/campaigns/attips
UM Mobile Users Group: December 5, 2014 Meeting: http://www.instructionblog.com/mobileusers/december-5-2014-meeting/

Where the Weird Things Are

So, when I got back from my trip to MLA, I went to work, and this weird thing happened.

See what I mean? And it did feel weird. I was talking to someone today about why it felt weird, and it’s basically because I’m not doing anything that special, nothing that I don’t know perfectly well people all around me are also doing. So why not give them ALL awards, eh? The parable (or parallel) I have is weddings, graduations, and such. They aren’t for YOU. The marriage is for you, but the wedding is for your friends and family. The degree and what you do with it is for you, but the graduation ceremony is for your friends and family. Right? The award is less about anything I’ve done, at least in my mind, and more about saying in a public way that all of you who are doing the same kind of cool things, YAY for you! YAY for us! Keep doing it, that’s the kind of stuff we want in our community. Does that make any kind of sense?

Ironically, I had just returned (at about 1:30AM that morning!) from a conference in Austin, where the slogan is, “Austin. Keeping it weird.” I had officially heard about the award that morning, and a bunch of colorful ideas flooded into my mind. I thought I’d say a few words, and that idea got … well … I got carried away. Evidently, whatever I said was OK, because some folk told me, “Whoa! You went all “The Moth” on us!” Other people came up afterwards and said, “Me, too.” Since then, individuals have been telling me they were hearing others talking about it. And I was asked to try to write some of it down and blog it. I’m kind of murky on what exactly I said, but I do still have the approximately 25 words of notes that I scribbled down in the morning. So here goes, not trying to remember word-for-word, but generally trying to keep the same tone and feeling.

JUST A FEW WORDS

I just got back from Austin, where the local badge of pride is reflected in the slogan, “Keeping it weird.” I was looking at tshirts to bring back to the family, and noticed one that I just had to get for myself. (I was actually wearing it at the celebration, but no one could see it becauseI had other garments over it.) The one I had to get was a parody-slash-mashup of Where the Wild Things Are.

Wild Things

The tshirt said, “Where the Weird Things Are.” Of course, I had to get it! Books, right? Right!

Where the weird things are

So they told me that morning that I was going to get the Diversity Award today. I was thinking about weirdness, who’s weird, what does it mean to be weird, how does weirdness tie in with diversity. There was a trending hashtag on Twitter, #DescribeYourselfIn3Words. My first reaction was, “Well, that’s not very diverse! Three words isn’t very much to describe any of us. But I tried. I did it twice. That’s six words. I suppose that’s probably cheating? Here’s what I called myself.

#DescribeYourselfIn3Words: Militant Moderate Librarian

First, I said, “Militant moderate librarian.” To me, this describes my identity, that I am a librarian down to the bone, deep in my soul, and my view of what it means to be a librarian: unbiased by intention and determination. It’s a LOT of work.

#DescribeYourselfIn3Words: Inspire, Be Inspired

Next, I said, “Inspire, be inspired,” which I see as my job description, and I know that many of us working here in this library system feel the same way. I adopted that one from Hugh McLeod, “Gapingvoid.” I saw this years ago, when I was new to being the Emerging Technologies Librarian, and had just gotten my income tax refund, so indulged (HUGELY, this was a BIG indulgence for me) and bought it. It hangs on my wall right now, where I will see it every single day. It means a lot to me.

Gapingvoid: Inspire, Be Inspired

So, while three words aren’t very many, especially in the sense of describing an entire complete unique quirky diverse individual or community, but maybe they can serve as a kind of mission/vision statement, or emotional touchstone.

Library Diversity Celebration: Walk in my shoes.

The theme of today’s event is “Walk in My Shoes.” I’ve been walking around, looking at the displays, reading the signs, reading the stories. They’re pretty amazing. The grandmother who was a ballerina? I love that one. James’ story about the shoes that make you more wonderful when you believe in them? Powerful! Here are my shoes.

My Shoes

Down at the conference in Austin, someone told me they are great classic librarian shoes. Yeah. Boo hiss. I wasn’t too happy, either. I told him these are not so much librarian shoes as medical prescription shoes. I have foot orthotics, and foot pain. I wear these shoes because the orthotics fit into them and because they don’t hurt as much. Before I wore foot orthotics, I had some beautiful shoes. Purple, green, red. Hightops colored like blueberries and lined with soft terrycloth. Deep purple Converse hightops my daughter gave me for my 50th birthday. Spiked heels striped with earth tones. Elegant flats decorated with clip on red and black accents. Tennis shoes that belong in a Brooklyn Museum: Rise of Sneaker Culture, decorated and carved with geisha, comics, flowers, leaves. Leaving footprints that reveal an ukiyo-e kiss.

New Green Shoes: StitcheryNew Green Shoes: Light and Shadow

I love my old shoes. Sometimes I loved them so much that they would wear out, the sole would tear off, and I would save them for years trying to find another pair. Now, I wear old lady librarian shoes, the same pair, all day, every day. And I have a closet of beautiful shoes I can’t wear, but can’t bear to give away, at least not yet.

Curiously, shoes are how I first got into diversity. Really! How many of you remember Highlights Magazine for Children? It had a very distinctive style of art work, and the stories were all educational and/or morally uplifting.

chatold woman with fishbowl and goose

My parents always had a subscription to this, as long as we had kids in the appropriate age ranges, and we had a lot of kids. It must have been when I was very young, just learning to read, when I saw a story about learning to “walk in another man’s moccasins,” only they called it the “in the skin game.” I thought this sounded fantastic, fascinating, amazing! The story asked the children to stop and imagine what the other person in the story might be feeling, where they came from, what their family was like, what was going on that wasn’t visible that made them act the way they did. The story came to an end, but the game didn’t. I found it so deeply engaging and fascinating, I kept doing it. People watching. Trying to understand. Evidently, I never really learned to turn it off!

Lately I’ve been doing a lot of reading about what is called Intergenerational Transmission of Trauma (IGTT). Sometimes it’s called Transgenerational Transmission of Trauma (TGTT).

Google Scholar Search: (“intergenerational transmission of trauma” OR “transgenerational transmission of trauma” OR “inter-generational transmission of trauma” OR “trans-generational transmission of trauma”)

Briefly, the idea is that a predisposition to experiencing traumatic events is passed along from parent to child, like a baton in a race, handed on from generation to generation.

“The idea that a parental traumatic experience could reach the second generation soon gained consistency. Clinical studies reported a wide range of affective and emotional symptoms transmitted over generations: distrust of the world, impaired parental function, chronic sorrow, inability to communicate feelings, an ever-present fear of danger, pressure for educational achievement, separation anxiety, lack of entitlement, unclear boundaries, and overprotectiveness within a narcissist family system.” (Braga, Mello, Fiks, 2012)

Most of the research on this idea has been done in easily identifiable communities which have experienced severe trauma in a generational context. African American families that experienced slavery. Jewish and Polish families of Holocaust survivors. Native American or First People families. Families of war and combat veterans. Refugees. With domestic violence it’s harder to identify a research study cohort, but they’re looking at this, too.

All around the room heads were nodding. How many of us have families that have experienced trauma? How many of us have families that have NOT experienced trauma?

When the research first started, they believed that the process of transmission, of passing along the trauma, came from children imitating the behaviors and beliefs of the parents, or that the parents (consciously or unconsciously) taught the children maladaptive ways to respond to the world, based on their own experiences of trauma. Now, researchers are starting to believe it runs deeper than that. Research is leaning towards the idea that significant trauma of these sorts can literally rewrite our genes, and can change what genes are preferentially passed on to our children. I’ll do another blogpost about this, but just try searching epigenetics of trauma to dip into the literature.

The gist of the idea is that the experience of trauma causes changes to many of our body’s systems, most importantly the immune system, hormone levels (especially cortisol), as well as the brain and nervous system. To put it even more briefly, trauma early in our life or our parent’s lives can make us more likely to get sick physically later, to develop mental illness, and to respond to life in ways that make us more likely to experience trauma ourselves. The changes to the brain either make it so people over react to potentially threatening environments, or under-react. Either way, it puts them (us?) at heightened risk through a response that is out of sync with the actual threat level.

Our friends and colleagues who come from cultures rich in traumatic pasts may still be experiencing things in their own lives that were shaped generations ago. Does that mean that IGTT gives everyone with a familial history of trauma a “get out of jail free” card for responsibility for our own actions? Not exactly. Yes, we have to understand how this shapes trauma across generations, and shapes the actions of people now. Sometimes I’ll ask people, “Be a little more understanding of this lady, she’s in severe pain pretty much all the time, and that’s why she’s a little short tempered. Be patient.” That idea applies here, too. None of us know what the other person is going through, what they have gone through, what their parents or grandparents went through. I wonder how my life might have been different if my mother hadn’t been badly abused as a child, if her mother hadn’t been subjected to extreme prejudice and poverty through racism, if my dad’s dad hadn’t had addictions, and so forth. I might have been a completely different person. I expect most of us have something in our family histories along these lines. There are tales that are not passed along, at least verbally, but they still show in our genes. It can hurt you, even if you never knew it happened.

The good news is that our genes and our family history can ALSO foster resilience! And that for the epigenetic changes we’ve been passing along from generation to generation, we CAN begin to break the cycle. Here are some things that seem to be helping in some communities (with more details and sources coming in another blogpost):

a nurturing social environment;
especially giving added nurturing early in life;
providing safe places and spaces;
giving future at-risk parents support and training in parenting before they become parents;
teaching resilience, appropriate responses to stress and threat;
teaching how and when to trust, building social decisionmaking skills;
giving and modeling genuine healthy attachments, love, and caring;
identifying and dealing with the trauma;
and sleep.

We’re still learning what works, and what works best. To me, it sounds like a big part of the issues of IGTT tie directly into the vision and missions of diversity initiatives in corporations and enterprises all across the world.

Know the problem.
Say the problem.
Change the things that made the problem.

Isn’t this one part of why we have diversity initiatives? Partly to try to fix the problems, partly to stop perpetuating the problems, and partly because there are so many wonderful people and wonderful possibilities that we miss out on when we aren’t including different points of views and different kinds of people. All three of those impact on the day to day life for all of us. Fixing the problems helps reduce crime, improve health, reduce costs, improve creativity, and ultimately improve resilience across our entire society.

To tie this all up, where are the weird things? Well, not just in Austin, that’s for sure. We are all of us weird, just some of us are more weird than others. And that’s ok, as long as we accept it, and make a safe space for everyone. So.

Where the weird things are?

Here.

Here, is where the weird things are.
Us, we are the weird things.

My New (Gapingvoid) Tshirt! (And my job description) 150529