Category Archives: Health, Healthcare, Support, Science

Promoting Human Rights Through Science: What do we do, What can we do, and What’s right to do?

Screenshot of title page

Screenshot of the title page of the article. Please go to the article itself for full description.

“Promoting Human Rights Through Science.” That’s the title of a new article, available today from Science Magazine. (Ironically, unaware of this, today I wore my “March for Science” t-shirt to the office as a “casual Friday” thing.)

Promoting human rights through science
Lauren Segal, Ryan Dz-Wei Chow, Brijesh Kumar, Jenny Nguyen, Kun-Hsing Yu, Jennifer Chen, Emre Ozan Polat, Kaitlyn Elizabeth Porter, Michelle Kelly-Irving, Israel Bimpe, Kristy A. Winter, Runxi Zeng, Majid Ahmed, Dustin Ray Saalman, Joshua Isaac James, Michal Kosinski, Easton R. White, Fernanda S. Oda, Hope Bretscher, Perrine Hamel, Swati Negi, Ali Jawaid
Science 06 Oct 2017:
Vol. 358, Issue 6359, pp. 34-37
DOI: 10.1126/science.aaq1083
http://science.sciencemag.org/content/358/6359/34

I know for myself, it has always been important to me to have my work include opportunities for advocacy for others, a chance to make a difference, to better lives. In the Dentistry Library, we worked to support outreach, information, education, research, and clinical work in the last major social healthcare frontier in the USA. In my job as the Emerging Tech Informationist I am able to be part of the conversations around adopting and developing new technologies and keep the questions in mind of how patients and the public are being included, and how technologies create new disabilities even as they create new opportunities. As a researcher, I work to the best of my ability to ensure that my work has the potential to not only inform interesting questions, but to empower others to apply our work and methods in their own environments. I try to publish in open access journals, I try to use open source tools. I try to make my methods crystal clear and replicable. I try to share my data. I try to partner, widely, and sometimes that means compromising and negotiating and educating around issues of intellectual property, access, openness, transparency, and so forth.

In today’s SCIENCE article, these are the human rights they highlighted:

Right to food
Right to health
Right to be remembered
Right to information
Right to education
Right to privacy
Right to a healthy environment
Right to culture

Of course, by far the most populous section was “The Right to Health,” with discussions of communities, cultural context, disparities, vaccines, delayed diagnosis, disasters, social determinants of health, health literacy, and policy loopholes that can be exploited in ways that undermine health rather than promote it. Powerful stuff.

We need to push this out, especially those of us on social media. This is the sort of thing that directly impacts on how the public view science and scientists, and thus has the potential to downstream impact on funding. But that can’t happen unless the public is aware of this, so it’s important to get this out beyond the Academy. It’s important for us to expand upon this, to tell our own stories of why human rights matter to us, why science matters to us. Just as with poets, and pop singers, and athletes, most of us aren’t doing this to get rich, and most of us won’t get rich. Most of us do research because we want to make a difference, we love the science and research and learning new things, and we see exciting opportunities when we place those side by side. How can we help the general public see that in each of us, and in science overall?

More important, can we use articles like this, stories like these to engage with the public in conversations around these topics. Are the rights mentioned here the ones that are actually important to the people around us, and to our society at large? If so, how do we tell those stories so that they see we’re there, too? If not, why not? Is there something people need to know that they don’t? Is there something they know that we don’t? I’m a big fan of the Cochrane Collaboration’s efforts to include patients on the research teams, not only to inform the process and to support “translation” of findings into practice, but perhaps most importantly to shape what questions are asked and studied, to help assure that these are the problems that really matter. Making the stories of science and scientists widely available and engaging with the public around them is the first step in entending that model into all of science. You can help. Share this article, talk about it, challenge it, ask questions, ask for more.

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On D-Day, Exploring the Context of “As We May Think”

As We May Think (Cover)

During National Poetry Month (April), I thought it would be interesting to quote one of the poems published in the same issue of The Atlantic Monthly as the incredible essay, “As We May Think,” by Vannevar Bush.

“As We May Think” was required reading when I was in grad school, and it still it. This is a work that was truly seminal in shaping the origins of the Internet, hypertext, the Web, more. Provocative, inspirational, decades before its time. It’s online, easy to find, and it’s even open and free to the world. When I went looking for poems from the issue, though, that was not easy to find, much less free. I ended up having to request the print copy. Print. Really? You must be kidding me, but no, it’s true. It took me a month to believe I wasn’t going to find it online, and another few weeks for me to place the request for the print and find time to actually look at it.

You know what happens with print? You go looking for one thing, and find something else. You turn a page, and a picture catches your eye. You start to skim one article, but a beautiful word or phrase on the facing page distracts you. Before you know it, you are turning pages whether or not they have anything to do with your original question.

Let me tell you something about the issue of The Atlantic for July 1945. It was published less than a year after D-Day. It was published only a few months after the official end to the war. It was published when people first began to see, to believe, that World War II really was going to end, and stay done. It was the beginning of moving through the shock and trauma of the war, beginning to tell stories that couldn’t be born, that no one wants to remember.

When I first read “As We May Think” it seemed all shiny and glossy, this vision of what might someday become computers, personal assistants, ready flexible access to information. The dream that was so much bigger than people realized at the time, bigger than I realized when I read it in grad school. I had no idea that this was one essay of a larger series that The Atlantic was publishing on science and the war, no real idea of the world in which it was written. Sure, we studied WWII in school, read about the concentration camps, the war bonds, the atom bomb, the refugees, the destruction of historical treasures across Europe, the bombing of London, the evacuations, the debates in America about whether or not to enter the war, the American resistors who joined the war efforts in Europe early and were shunned as unpatriotic for the rest of their lives.

It never really came alive for me, though, in the way that it did when my computers broke this week and I went through the journal issue that contained Vannevar Bush’s essay. Some of what I found there:
– “paper bombs” as tools to influence thought
– Ad: advertisements on new technologies created for the war that had drastic impacts on food and home lives of civilians (from ice cream to oranges to vitamins)
– serious examinations of media reporters, “their reliability, their prejudices, and their mistakes”
– the role of propaganda on both sides of the conflict as obvious and visible even at the time
– first person reports of Buchenwald, shocking ghastly stories neglected from modern reports of the camps
– bitter heart-wrenching poems of soldiers from the fronts
– sweet stories of life back home, still edged with fatigue and loss and an undertone of the global anxieties, and stories of life with what we now call PTSD or depression or anxiety or others
– “Should Jews Return to Germany?”
– Ad: the misunderstood science that led to putting iodine in gasoline
– “Prithee, Little Book, Who Made Thee?”
– Ad: “Coal? Yes, indeed, it’s a big item in the drugstore!”
– Ad: “For the first time in history, a world without poverty and without war is technically possible. Whether we achieve it depends on how well we understand the ‘Economies Of Peace’.”
– book reviews of and advertisements for works by Henry James, Upton Sinclair, Thomas Mann, John Crowe Ransom, W. H. Auden, and other familiar names.

Somehow, “As We May Think” takes on a different flavor in the context of essays, and poems like this snippet from Sasserath, which resonate so very differently now than when they were written, that echo with limits and struggles that repeat now in some places and yet have become fictions in others.

“We who must live on substitutes for life,
The powdered egg, the dehydrated spud, …
Or learn the art of love with plastic limbs …”
“On Anodynes, by Simpson Sasserath, RT2/c

Reading and seeing “As We May Think” in the context of the series of which it was a part, similarly lends a depth that makes it seem even more extraordinary. The series was called, “A Scientist Looks at Tomorrow,” beginning in 1945 ad stretching to at least 1947. It included titles such as these:

– The Social Animal / Caryl P. Haskins
– Stars, Proteins, and Nations / Philippe Le Corbeiller
– A Design for Fighting / Harlow Shapley
– Penicillin, Plasma Fractionation, and the Physician / Dr. John F. Fulton
– A Physicist Returns from the War / I. I. Rabi
– Psychiatry and the Way / Big. Gen. William G. Menninger
– DDT and the Balance of Nature / V. B. Wigglesworth

I’m now curious to find them all, as a fascinating window into what was considered the cutting edge of emerging technologies in the mid-1940s. But the few sentences that resonated with me most closely came from a few months after the Bush essay, towards the end of the year, in an essay called, “The Return to Love,” by Rollo Walter Brown.

We can take our choice. If we do not believe that the awakening, the generosity, the loyalty, the warmth, expressed in love can transform the world into something more livable than what we now have, then we can take the alternative and believe that husbands and wives who cannot endure each other, neighbors who cannot endure each other, races who cannot endure each other, people who scoff at anyone who would make an improvement, can somehow, added together, constitute one world living in amity. We can wait among our raucous hatreds until somebody somewhere decides to enforce his special hatred with some super-super atomic bomb. That is something definite and “realistic.” But might we not have a more interesting world if we tried love?

Accessibility through Social Media for Libraries 101

Just a quick collection of resources I find helpful in using social media to create better and broader access (and accessibility) for library events and more.

ACCESSIBILITY

There are many ways of interpreting the word “access.” The ones I encounter most often are 1) access (as in this thing exists somewhere I can find it or get hands on it, which I think of as ‘discoverability’) and accessibility (as in I can use this, even if I’m a person with a disability, whether my functional difference is visible or invisible).

Golden rules of social media accessibility: http://www.danya.com/files/sma_poster.pdf

Accessibility Hub: Social Media Accessibility – Facebook, Twitter, and YouTube: http://www.queensu.ca/accessibility/how-info/social-media-accessibility

Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

SSB Bart Group: Accessibility in Social Media: http://www.ssbbartgroup.com/blog/accessible-social-media/

ePolicyWorks: 5 Things: https://www.epolicyworks.org/epw/wp-content/uploads/2013/11/ePolicyWorks_SocialMediaAccessibilityTips.pdf

District of Columbia: Office of Disability Rights: Technical Assistance Manual: Section 508: Website and Social Media Accessibility: https://odr.dc.gov/sites/default/files/dc/sites/odr/publication/attachments/Web%20and%20Social%20Media%20AccessibilityTechnical%20Assistance%20Manual.docx

Accessibility U: Accessible Social Media: http://accessibility.umn.edu/tutorials/accessible-social-media

Global Disability Rights Now: Creating Accessible Social Media Campaigns: http://www.globaldisabilityrightsnow.org/sites/default/files/related-files/243/Social%20media%20and%20accessibility.pdf
[comment: I find it super ironic that a site on disability rights is providing accessibility content as a PDF.]

LIBRARY EXAMPLES & ARTICLES

Use of social media by the library, current practices and future opportunities: A white paper from Taylor & Francis: http://www.tandf.co.uk/journals/access/white-paper-social-media.pdf

University of Virginia: Library: Legal Information about Media Accessibility: http://www.library.virginia.edu/services/accessibility-services/media-accessibility-resources/legal-information-about-media-accessibility/

Social Media and the Science Library: How It Really Works: http://www.rsc.org/globalassets/14-campaigns/m/lc/lc16026/royal-society-of-chemistry-social-media-ebook.pdf

#FridayReads: Library and campus engagement through social media: https://link.highedweb.org/2017/02/fridayreads-library-and-campus-engagement-through-social-media/

TOOLS

One of the benefits of social media is that it makes content more readily discoverable by a broader audience in time and space. One of the drawbacks is that many social media platforms aren’t easy to use by people with various disabilities. This is just a tiny sampling of some of the information or tools that might help with some parts of that, although not others.

Facebook: https://www.facebook.com/
– Facebook Accessibility: https://www.facebook.com/accessibility/

Twitter: https://twitter.com/
– Easy Chirp: http://www.easychirp.com/

Lanyrd: http://lanyrd.com/

Storify: https://storify.com/

SOCIAL MEDIA POLICIES

If you don’t have a social media policy, you will probably live to regret it. Here are some examples.

Why Have a Social Media Policy for Your University Library? http://www.proquest.com/blog/2013/why-have-a-social-media-policy-for-your-university-library.html

Creating a Social Media Policy: What We Did, What We Learned: http://www.infotoday.com/mls/mar13/Breed–Creating-a-Social-Media-Policy.shtml

Example social media policies from libraries

Cleveland Public Library: https://cpl.org/thelibrary/usingthelibrary/policy-on-the-use-of-cpls-social-media-sites/
Monroe County Public Library: https://mcpl.info/geninfo/social-media-policy
Plum Creek Library: http://www.plumcreeklibrary.org/jackson/Docs/social%20media%20policy.pdf
TAZEWELL COUNTY PUBLIC LIBRARY: https://tcplweb.org/wp-content/uploads/sites/22/2015/03/TCPL-Social-Media-Policy.pdf
Thomas Crane Library: http://thomascranelibrary.org/sites/default/files/Social%20Media%20Policy.pdf
UNC University Library: http://blogs.lib.unc.edu/news/index.php/social-media-policy-for-library-employees/
Washington State University Libraries: http://www.wsulibs.wsu.edu/policies/social-media

GUIDELINES ETC.

Where to start first

Federal Social Media Accessibility Toolkit https://hackpad.com/Federal-Social-Media-Accessibility-Toolkit-xWKKBxzGubh

Federal Social Media Accessibility Toolkit Hackpad: Improving the Accessibility of Social Media for Public Service https://www.digitalgov.gov/resources/federal-social-media-accessibility-toolkit-hackpad/

More resources

Section 508: Create Accessible Video and Social Media https://www.section508.gov/content/build/create-accessible-video-social

Media Access Australia: Social Media for People with a Disability: https://mediaaccess.org.au/web/social-media-for-people-with-a-disability

Improving the Accessibility of Social Media in Government: https://www.digitalgov.gov/resources/improving-the-accessibility-of-social-media-in-government/

Social Media and Accessibility: Resources to Know:
https://www.digitalgov.gov/2015/01/02/social-media-and-accessibility-resources-to-know/

Your Opinion Matters

Legendary Phoenix: Your Opinion

I find myself disturbed by today’s TeeFury special, by Legendary Phoenix. The image shows Rick, a stereotypical scientist in a white lab coat with messy hair, a unibrow, eyes ripe with ennui, bags under his eyes, a pointy nose, and a glum descending (and condescending) mouth. The scientist is saying (in a word bubble), “I’m sorry, but your opinion means very little to me.”

TeeFury: Legendary Phoenix: Your Opinion

I expect some science geeks to jump up and down with glee and say, “You see? It’s not about OPINIONS! Ha! Gotcha!” However, one of the greatest challenges in science communication and science literacy is this perception that scientists are unpleasant, self-centered, passionless, people unwilling to listen or hold a civil conversation within the public sphere. “Your opinion means very little to me” could be “because I really prefer evidence over opinion” or it could be “because I’m socially inept and don’t care what people think” or it could be “because I bloody well don’t think you have anything to offer, and so I’m not listening” Or all of the above (and more).

And however you read it, these imply scientists have nothing to learn from experience, no compassion, no courtesy, no duty to educate or inform or improve science literacy among the broader populace, no understanding of intellectual sharing or community building, etcetera. Of course, real life is actually the opposite, on all counts, but this is the common perception.

This common perception has resulted in dangerous and ill informed policy decisions, reduced funding for research, strategically ill-applied research funding, poor translation of science findings into practice, and ultimately, unnecessary deaths and misery among those (all of us) who would benefit from the implementation of scientific discoveries.

“Scientific literacy is an urgent and important issue. Why should we care? The answer is simple: Our way of life and our survival are at stake.” – G. Wayne Clough, Secretary Smithsonian Institution

Your opinion matters

What I want to say is, “Your opinion matters. It matters because I care about how you got to your opinion, and I can learn from that. It matters because you might have information or resources or data that informs that opinion which aren’t available to me. It matters because I might have information or resources or data that aren’t available to you, and which might help both of us. It matters because if we put together what you have and what I have and more, we might get a picture of the problem or solution that are closer to what we really need. It matters because what how you feel about your opinion and how I feel about my opinion give an emotional context that is important in telling stories and shaping policy. It matters because IT MATTERS. So, tell me what your opinion is, share your sources and stories, listen to mine, and let’s learn together.”

I’m not buying the t-shirt. Or maybe I should, so that I can have this conversation over and over again.

The “July Effect” and Tips for New Doctors

THE “JULY EFFECT”

It’s that time of year again. Maybe you’ve already heard of the “July Effect”? Here’s a post making the rounds again today illustrating the depths of sarcasm and irony with which this meme is sometimes considered in healthcare.

Ask a July 1st Medicine Intern http://gomerblog.com/2015/07/medicine-intern/

But this is an idea that goes back for years. The gist of the idea is that it’s dangerous to go to the doctor in July because the new interns start then.

Here are a few pieces presenting that perspective.

Kirchheimer, Sid. Avoid the Hospital in July. Why? New doctors and nurses report to work for the first time. AARP June 2013. http://www.aarp.org/health/doctors-hospitals/info-06-2010/why_you_should_avoid_the_hospital_in_july.html

Headed to the Hospital? Beware the ‘July Effect’ — July means a fresh crop of medical residents. Should that scare you away? http://health.usnews.com/health-news/patient-advice/articles/2014/07/21/headed-to-the-hospital-beware-the-july-effect

This idea has been around for decades, at least since the 1980s.

Dedra Buchwald, MD; Anthony L. Komaroff, MD; E. Francis Cook, ScD; Arnold M. Epstein, MD, MA. Indirect Costs for Medical Education: Is There a July Phenomenon? Arch Intern Med. 1989;149(4):765-768. doi:10.1001/archinte.1989.00390040007001. http://www.ncbi.nlm.nih.gov/pubmed/2495778

Of course, it’s not as simple as the popular press would like to make it sound, and there is far more research presenting the opposing (but less well known) view, or that it is a small effect and one which impacts only certain patients in specific circumstances. Basically, the idea is that The “July effect” is mostly not true, and has been well debunked.

“For the subset of patients with internal medicine diagnoses, the expected “July Phenomenon” was observed, with significant relative declines in diagnostic and pharmaceutical charges in teaching hospitals over the academic year. In contrast, surgery patients showed an increase in length of stay and various charges over the academic year in teaching hospitals. There were no meaningful effects of housestaff experience on mortality, operative complications, or nursing home discharge. These results indicate that housestaff training is significantly related to the use of hospital resources for inpatients, but that the degree and direction of the effects differ by specialty.” (Rich et al, 1993)

“Although this study finds no support for a “July Phenomenon” in terms of quality of clinical care, house officers were found to be more likely to have poor documentation practices earlier in the academic year.” (Shulkin, 1995)

“There was no evidence of an increase in negative outcomes early in the academic year compared with the end of the academic year. We believe that a systematic approach to the diagnosis, resuscitation, and treatment of trauma prevented a July phenomenon.” (Claridge et al, 2001)

“Although small differences in outcome exist with respect to the academic time of the year, the timing of these differences indicates that there is not a “July phenomenon” in obstetrics at our institution.” (Myles, 2003)

“We find that the annual house-staff turnover results in increased resource utilization (i.e., higher risk-adjusted length of hospital stay) for both minor and major teaching hospitals and decreased quality (i.e., higher risk-adjusted mortality rates) for major teaching hospitals. Further, these effects with respect to mortality are not monotonically increasing in a hospital’s reliance on residents for the provision of care. In fact, the most-intensive teaching hospitals manage to avoid significant effects on mortality following this turnover.” (Huckman & Barro, 2005)

“The data suggest a “July effect” on some outcomes related to shunt surgery, but the effect was small. Nonetheless, the potential morbidity of shunt failure, infection, and the cost of treatment indicate that continued vigilance and appropriate supervision of new staff by attending surgeons is warranted.” (Kestle et al, 2006)

“Conclusions: High-risk acute myocardial infarction patients experience similar mortality in teaching- and non-teaching-intensive hospitals in July, but lower mortality in teaching-intensive hospitals in May. Low-risk patients experience no such July effect in teaching-intensive hospitals.” (Jena et al, 2013)

“Particularly in major teaching hospitals, we find evidence of a gradual trend of decreasing performance that begins several months before the actual cohort turnover and may result from a transition of responsibilities at major teaching hospitals in anticipation of the cohort turnover.” (Huckman et al, 2014)

“Data from a single institution study did not show a “July Phenomenon” in the number of operating minutes, overutilized minutes, or the number of ORs working late in July.” (Sanford et al, 2016)

“These data, in combination with the findings of Shah et al,1 suggest that the July phenomenon can largely be debunked in the modern era of surgical education.” (Thiels et al, 2016)

… and much more (Pubmed, Wikipedia)

The basic fundamental idea is, unless you are a high-risk patient, it is PERFECTLY SAFE TO SEE THE DOCTOR IN JULY.

TIPS FOR NEW DOCS

Why is it safe? Because the new docs are well trained, and have experience in a variety of situations. This all made me very interested in the annual event on Twitter in which experienced docs share tips with new docs just starting out. The biggest and best hashtag is #TipsForNewDocs, but others included #DearIntern, #DearResident, and #DearPatient.

I’ve collected a bunch of these awesome tips for all those new docs that started today, and you can find them here.

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

Insights into the Lived Healthcare Experiences of the Transgendered (#TransHealthFail)

#TransHealthFail

#TransHealthFail

Several years ago, I was in an elevator with a then-local clinician (no longer here) who was complaining to me about how unhappy he was with his clinical practice. He had bought into the practice from another clinician who was retiring, and it wasn’t until he moved here and began actually working there that he discovered half of his patients were transgendered. I still remember how his face twisted up into a knot and his beard waggled as he snarled with disgust about being forced to treat “THOSE people.” He told me, “You don’t know. THEY are EVERYWHERE around here! How could I expect that?” I got out of the elevator as soon as I could. And then I started trying to plan a trans education event for our library. It took some years to be able to make it happen.

I was so excited when I heard about the Trans Health Fail hashtag during the Stanford Medicine X conference. I’ve been wanting to blog about it for a couple months, and finally it is happening. The post is divided into four sections: reports of experiences (mostly with insurance, staff, and clinicians); longer personal testimonials; healthcare reactions; and popular media. There is even a section where trans people have given kudos to the absence of failure, when folk have gotten it right. Most important take-away lessons to learn? Names are important (not just for people who are transgendered, but perhaps especially for them). Privacy is important. Respect is important. Information is important. Access to care is life-saving. Another big part of the conversation centers around the high mortality of transgendered persons, both from violence, and stigma. The basic assumption of what SHOULD be happening in healthcare gets back to “First do no harm.” A lot of the perceived harms which are described could be changed fairly easily just by better education of healthcare professionals of all sorts, and the office and support staff in healthcare facilities. Some of them make complete sense to professionals working inside the healthcare system, but obviously did not to the person on the other side. If you haven’t yet noticed this conversation, it’s worth taking a few minutes to explore. It could save lives. And if you are a healthcare provider who actually can and will treat transgender persons, please be aware of the Provider Self-Input Form for the Trans & Queer Referral Aggregator Database from RAD Remedy

LIVED EXPERIENCES

LIVED EXPERIENCES: Access to Care

!! https://twitter.com/TGGuide/status/629892052914991104

LIVED EXPERIENCES: Insurance

LIVED EXPERIENCES: Healthcare Environments & Systems

LIVED EXPERIENCES: Supporting Roles

LIVED EXPERIENCES: Clinicians

!! https://twitter.com/anaphylaxus/status/639815813495701504

LIVED EXPERIENCES: Children

LIVED EXPERIENCES: Done Right

TESTIMONIES

HEALTHCARE RESPONSE

MEDIA ATTENTION

Atlantic

BitchMedia ??

Buzzfeed

Cosmopolitan

DailyBeast

DailyDot

Distractify

FacesOfHealthCare

Feministing

Fusion

HuffPostGay

HuffPost

Indiana

MarySue

Mashable

Metronews Canada

Mother Jones

NewNowNext

Patient Opinion

Vice