Tag Archives: diversity

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

#WHDemoDay and #ADAinitiative — Oh, the Irony


Welcome to Demo Day at the White House! (Megan Smith, the First US Chief Technology Officer) https://www.youtube.com/watch?v=PxGrDsuwCFk

“It’s a tradition in the tech community to show off amazing things that people have built. … All Americans do this. All American are capable of this. And it’s a big part of our future, and it’s always been a big part of our past.”

Yesterday was a landmark day in diversity and inclusion.

Yesterday saw the first ever White House Demo Day (#WHDemoDay), for women and minority entrepreneurs and innovators to ‘pitch’ their ideas to President Obama.

Yesterday saw the end of the ADA Initiative, “a feminist organization. We strive to serve the interests and needs of women in open technology and culture who are at the intersection of multiple forms of oppression, including disabled women, women of color, LBTQ women, and women from around the world.” (Ada Initiative, About Us)

How enormously ironic to see the closing of the one with the opening of the other, and both with such closely related missions. I can only hope that this first White House Demo Day proves to be one of many, and that the effort continues to embrace and support diversity as essential to American creativity and innovation.

White House Demo Day

The White House Demo Day had demonstrations to illustrate the diversity of people contributing to the innovation that helps strengthen the American economy. Most of the companies presenting had at least one woman founder or co-founder. Almost as many of the companies presenting had a founder that is a person of color or who shows ethnic or cultural diversity. The two companies represented by white men were (1) military, and (2) a winner of the XPRIZE. There were a few wonderful presenters from Michigan, including Ann-Marie Sastry of the University of Michigan Ann Arbor talking about her innovations in batteries and power storage. Products presented included new search engines based on cognitive models, medical innovations in cancer / HIV / aging / asthma, parenting tools, strategies for empowering patients, creative ways to repay student loans, several on converting ‘waste’ to profit, and much more. There was even Zoobean, who partner with libraries to recommend books and apps based on children’s preferences.

White House Demo Day

Part of what made this so wonderful (and why I wish I’d heard about it sooner) was the move to encourage parallel events across the country. I wish we’d done this here! Here are some tweets about the high points.

Read about the presenters here. Listen to the pitches here.


President Obama Hosts the First-Ever White House Demo Day https://www.youtube.com/watch?v=aKsxHS5vptM

White House Demo Day: https://www.whitehouse.gov/demo-day

Ada Initiative

“When the Ada Initiative was founded in 2011, the environment for women in open technology and culture was extremely hostile. Conference anti-harassment policies were rare outside of certain areas in fandom, and viewed as extremist attempts to muzzle free speech. Pornography in slides was a regular feature at many conferences in these areas, as were physical and sexual assault. Most open tech/culture communities didn’t have an understanding of basic feminist concepts like consent, tone policing, and intersectional oppression.” https://adainitiative.org/2015/08/announcing-the-shutdown-of-the-ada-initiative/

The Ada Initiative began by trying to change the world for women in STEM and tech. They stopped, but not without having made change, and not without leaving a permanent legacy. You’ll see tributes and comments below to testify to this, but you’ll also see links to some of the content they made open source and Creative Commons in order to help perpetuate their work, as well as work from some of their partners who carry on the good message and work. By the way, their open source toolkits are absolutely incredible and well worth downloading.

HOWTO design a code of conduct for your community https://adainitiative.org/2014/02/howto-design-a-code-of-conduct-for-your-community/
Code of conduct evaluations http://geekfeminism.wikia.com/wiki/Code_of_conduct_evaluations

Announcing the ADA Camp Toolkit: https://adainitiative.org/2015/07/add-a-little-bit-of-adacamp-to-your-event-announcing-the-adacamp-toolkit/

ADACamp Toolkit: https://adacamp.org/
– Inclusive event catering: https://adacamp.org/adacamp-toolkit/inclusive-event-catering/
– Providing conference childcare: https://adacamp.org/adacamp-toolkit/childcare/
– Quiet room: https://adacamp.org/adacamp-toolkit/quiet-room/
– Supporting d/Deaf and hard of hearing people at an unconference: https://adacamp.org/adacamp-toolkit/supporting-deaf-people/

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