Tag Archives: advocacy

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

HOLD THE PRESSES!!! Wave the Flag! Susannah’s Coming!

Pic of the day - Flag in Dawn's Early Light

I could not have been more delighted when late yesterday I saw a post on Gilles Frydman’s Facebook stream to the effect that Susannah Fox is the new CTO of HHS (meaning: Chief Technical Officer of the United States Department of Health and Human Services). Gilles was sharing Susannah’s post on the HHS Idea Lab Blog (worth following, if you don’t already).

Susannah Fox: I’m the New CTO of HHS: http://www.hhs.gov/idealab/2015/05/28/im-new-cto-hhs/

Executive.gov: Susannah Fox Named HHS CTO: http://www.executivegov.com/2015/05/susannah-fox-named-hhs-cto-sylvia-mathews-burwell-comments/

FedScoop: “Susannah Fox, an expert on the intersection of technology and medicine, takes over for former Chief Technology Officer Bryan Sivak.” http://fedscoop.com/hhs-names-next-cto

In that post Susannah talks about her work with the Pew Research Foundation, Robert Wood Johnson Foundation, and much more. She talked about how very much she was enjoying being exactly who she is and where she was. And then, something magical happened, something magical for all of us: the HHS recruited her, went after her, and convinced her to take the CTO job. This is magical because Susannah is not just intelligent, expert, influential, and well connected. Susannah has heart. She is kind to strangers. [See Regina’s post on Susuannah’s Walking Gallery jacket: “That was my idea of Susannah Fox. I did not know her name. I did not know her job. I only knew that she was kind and was a good mother.“]

Susannah is gracious, polite, honest, and real. Susannah has family and friends, people she cares about with real day-to-day health struggles. Susannah is a person, a REAL person. She is fiercely, heart-wrenchingly protective of her kids. She thinks her hair looks funny, and she fusses to get it just so. I think she’s gorgeous, of course, and she rolled her eyes and laughed when I said her hair was lovely. She has hobbies and interests beyond the job. She has a passion for helping others, because she really CARES, and for helping others in the right way, with information and evidence and data and tools. She doesn’t help just the anonymous strangers because it looks good. She doesn’t just help the people she loves because she loves them. She is kind and helpful everywhere she goes, because that’s who she is. But she does it smart. She knows limits, and she knows that limits can be stretched when we collaborate. She knows tough choices. She knows the problems of the world can’t be forced into coming out the way we wish they would.

Susannah and I have talked over social media, email, various ways for years, and I was lucky enough to meet her in person last fall.

See? That’s me, all the way down at the end of the line. Alicia Staley is in front, Susannah is next, and Pat Mastors right before me. It was great fun, and they were all so kind. I, and so MANY others are excited, because we see hope for real, meaningful, significant change in American healthcare policy and leadership. Here are a few selected comments from public Facebook and Twitter about this (with many MANY more that weren’t public, so I didn’t share them here).

Gilles Frydman: “Today is simply a really great day for real, meaningful patient empowerment!”

Me: “Huzzah! Hurray! Whoohoo! Susannah Fox is the new head honcho of all things tech at HHS! WHOOOOO!”

e-Patient Dave DeBronkart: “This wins my prize as the biggest government-based Mazel Tov in the history of the e-patient movement! Bringing heart and soul to health IT??? From someone who knows how people ACTUALLY use the internet?? How great is this??”

Tim O’Reilly: “Awesome news from @SusannahFox http://1.usa.gov/1J5RsQt She is the new CTO of HHS. Big win for all of us!!”

Hugh Campos: “Today is a great day for the ‪#‎epatient‬ movement: Susannah Fox has announced that she’s accepted the job of CTO of HHS. Absolutely thrilling news!”

Brian Ahier: “I am so pleased that +Susannah Fox is now the CTO at HHS! Not only is she the first woman to hold this post, but she is one of the strongest advocates on behalf of patients, an incredible thought leader in the realm of health data (a true health data geek :-), but she is a genuinely wonderful person who will bring a whole new viewpoint to this role.”

Nedra Weinreich: ” A perfect role for a woman who combines tech savvy with human compassion. Congrats, Susannah!”

Meredith Gould: “SuperMongoHuge Congrats to @SusannahFox on becoming new CTO of HHS http://1.usa.gov/1eBjN4p Brava!”

Kathleen Comali Dillon: “Great news for us all- Susannah Fox is a pioneer in healthcare and waaaaay ahead of the curve.”

Casey Quinlan: “Susannah Fox is now Head Geek at HHS. I’m ‘sploding with joy”

Regina Holliday: “And the whole world clapped!!!”

Annaliz Hannan: “Sometimes the government gets it right and we, the collective healthcare consumer, win. This is our day as Susannah Fox accepts the post as Chief Technology Officer of Health and Human Services. There is no doubt she is tech savvy but it is her trusted voice in advocating for your access to your health data that makes this a banner raising day.”

Craig DeLarge: “Sweeet! Good on you! Good on us!”

Alexander B. Howard: “This is exceptionally good news for the American people.”

Joe Graedon: “Pretty amazing. Some days the good guys win! Hallelujah. Susannah earned this through vision, hard work and attention to detail. Hooray.”

Marianne O’Hare: “She’s a powerhouse! But also has that wonderful skill of making data-speak sound like a bedtime story.”

Christopher Snider: “Big news. Big deal. Congrats Susannah!”

Matthew Holt: “The lunatics have taken over the asylum in a great way today. @SusannahFox is now CTO of HHS”

Nick van Terheyden: “How cool is that – Susannah Fox appointed as CTO for HHS”

Jose Gomez-Marquez: “Congratulations! We couldn’t be more happy for @SusannahFox as the new CTO of @HHSGov and friend to geeks around :)”

I just wanted people to get to know her, a little. This is not just another by-the-book administrative appointment. This is special. Susannah is special.

“How Many Hives?”: Social Media Can Prevent a Crisis with Storytelling, Engagement, & Training

Michigan RenFest 2010

This post is about food allergies and communication strategies. But let’s step back a bit and see how I got here.

Yesterday morning early (for me, but not for most docs), I attended the local Pediatrics Grand Rounds with presenter Joyce Lee. Joyce was talking on Twitter uses for clinicians and researchers. That will be another blogpost, once I have a chance to work through some of the content presented. For today, I wanted to highlight one particular bit that Joyce presented about kids with food allergies. I had somehow previously missed this, and it is too good to miss! I am particularly interested in this since both my son and I also have food allergies.

Joyce is a pediatrician (I’m oversimplifying), and a mom of kids with pretty severe food allergies. She’s also very engaged in new technologies and is interested in new learning modalities and social media. That gives a bit of context for how she and her son came up with these phenomenal and effective ways for him to both learn and communicate what he needs to have for health care crisis prevention and support from the people around him. Frankly, from what I’m seeing here, he is MUCH better at being aware of his needs and communicating them than I am. This is also a very cool idea that I wish I had thought of when my kid was in need of this. I have a lot to learn here, and this strategy would have prevented a whole boatload of problems & events for our family over several years. This is GENIUS, pure and simple.

Joyce’s son, “B,” has severe food allergies. Note that they use a letter “B” instead of his name? This is to protect his privacy on social media. This is a good best practice, and one the kids should learn and adopt as well as the parents and teachers. And family friends, and pastors, and acquaintances, and … EVERYONE! Please, DON’T use a kid’s real name online!

The problem with food allergies, which I’ve faced, is at school other kids and teachers don’t understand and can inadvertently poison the poor kid. I remember how I wept with anger and frustration when I discovered that the school therapist my son was seeing was rewarding him for good behavior with foods that triggered undesirable behavior, and then sending him back into the mainstream classroom. I bet his main teacher wasn’t too happy either, and Lord alone knows how much school he missed from the migraines triggered by the dangerous foods. For B, a mistake like that could kill him.

PART ONE

So now, Joyce’s son has a blog.

I Have Food Allergies
I Have Food Allergies:
http://ihavefoodallergies.tumblr.com/

On his blog, he has his Youtube videos. This is the storytelling part of the post. Part One describes how to tell if he’s having a reaction, and what to do. Part Two describes how to avoid poisoning him, since it isn’t always obvious (as I am STILL learning, with my own food sensitivities). Here is the first video. When she showed this in Grand Rounds, the entire room full of doctors and nurses and other hospital staff were ooohing and aaahing and laughing. It is a very charming and effective way to deliver this lifesaving content. That’s the training part.


Allergy Action Plan (Antihistamine versus Epipen) http://www.youtube.com/watch?v=6Ymah1199xo

Joyce wrote a separate blogpost that explained the background, mechanics, theory, and how this was made.

Online Peer to Peer Education or shall we call it Peer to Teacher Education?
http://joycelee.tumblr.com/post/31910454867/online-peer-to-peer-education-or-shall-we-call-it

This is pretty cool stuff. Even more cool, the school decided to show the video to all of the kids in the school, 700 of them, and all the teachers. That’s the engagement part. Even more engagement, a blogpost by Wendy Sue Swanson (a.k.a. Seattle Mama Doc) brought more attention to this. Would this video help others understand food allergies? Does this training from this one young boy extrapolate to other kids and families?

Bring Paperwork To Life: Food Allergies:
http://seattlemamadoc.seattlechildrens.org/bring-paperwork-to-life-food-allergies/

PART TWO

Now, for comparison, let’s take a look at what a food allergy action plan normally looks like.

Food Allergy Action Plan
Food Allergy Research & Education (FARE) (www.FoodAllergy.Org): Food Allergy and Anaphylaxis Emergency Care Plan: http://www.foodallergy.org/document.doc?id=234

I’ll tell you, this is vastly more attractive, clear, and engaging than what they had when my now-college-age son was in school. Still, despite the vast improvements, it is a little scary to read through, especially if you are the one responsible for saving the life of someone else’s kid. It gives you the information, but it doesn’t make you laugh, or hear the kid’s voice when they describe how it feels for them when things go wrong.

The second video is my favorite. Less dire, but it covers all the information I need so desperately to communicate to my colleagues, restaurants, and friends. How do you not poison me? Wash the table, wash your hands, be wary of tricky foods. I especially love the part about tricky foods.


Allergy Action Plan, Part 2 (Please don’t poison me) http://www.youtube.com/watch?v=EGG6_EuK3oM

I wish so much I could make every restaurant employee in the country watch this video. And have it translated into other languages. My family spends a lot of time embedded in Japanese cultural activities, which includes Japanese restaurants. My main problem is with gluten, and you’d think I’d be safe there since their cuisine is based heavily on rice. You’d have trouble believing some of the bizarre experiences I’ve had in Japanese restaurants because of the language barrier — servers who bring me the gluten-free soy sauce, and then bring my food already doused with regular soy sauce. Oh, miso? Yes, it has wheat in it. (After I’ve eaten it and my mouth is tingling and swelling.) So why did you bring it to me? [Imagine a cranky face. More than cranky.]

Here Joyce explains more of the outcomes from the first video and considers aspect that might explain why it has proved so effective.

Allergy Action Plan Part 2: http://joycelee.tumblr.com/post/36728442953/allergy-action-plan-part-2-its-been-a-while-since

PART THREE

Did they stop there? Of course not!

One of the challenges of food allergies is that despite massive fine-tuning of your lifestyle, education of others, and so forth, there is no point at which you are completely safe, no point at which you can stop being aware, when you can rest and relax and trust that you are safe. But all of us have times when we’re tired, worn out, just not on top of our game, and must trust others to watch out for us when we aren’t quite doing such a great job ourselves. Something always happens. It is just when you get to the point of feeling safe, let down your guard, and that’s when it happens.

The videos are awesome and amazing, but what about when you aren’t online, when the class is outside or on a field trip? Joyce and B have made nametags, bookbag lists, and collaborated on making a booklet with his information. Kind of a quick reference as a backup for the content in the videos. Even better, they’ve made the original files available free online for other families and parents to use.

DESIGNING FOR HEALTH: A PEDIATRIC PROTOTYPE FOCUSED ON ALLERGIES http://joycelee.tumblr.com/post/50507408498/designing-for-health-a-pediatric-prototype-focused-on

Check out the blogpost for the other file links, but here is the PDF of the insides of the booklet.

Allergy Booklet: https://dl.dropboxusercontent.com/u/1112237/nametag/allergy%20booklet_51213.pdf

MORE

Joyce is not the only parent using social media to get out their story about food allergies, trying to get people to understand what it’s like. The more people understand, the safer life will be for those of us with food allergies and sensitivities. Here is another post from Seattle Mama Doc to round out the information in the post, and provide more context. These aren’t part of Joyce’s official story, but I bet she’s familiar with this stories. I know I am.

Four Hours on a School Bus: http://seattlemamadoc.seattlechildrens.org/four-hours-on-a-school-bus/

Here is a little more information. The basics, all in one small tidy package, and a couple useful links to learn more.

Don’t Be Shy About Food Allergies http://seattlemamadoc.seattlechildrens.org/dont-be-shy-about-food-allergies/

Food Allergy Research and Education (FARE): http://www.foodallergy.org/

Kids with Food Allergies: http://community.kidswithfoodallergies.org/pages/community

Hashtags of the Week (HOTW): Women’s Day & R-Word & ASL (Week of March 2, 2013)

Originally posted at the THL Blog: http://thlibrary.wordpress.com/2013/03/08/hashtags-of-the-week-hotw-womens-day-r-word-asl-week-of-march-2-2013/


Following up on yesterday’s post about International Women’s Day, I spent all week tracking the many different hashtags being used on Twitter to discuss this day and the events and initiatives associated with it this year. In addition to International Women’s Day, this week also included the annual day to End the R-Word, and the incredibly innovative all-in-ASL episode of the popular television drama, Switched at Birth. All three of these are important to various substantial but marginalized communities, and show the power of social media and the Internet to create awareness and include the voices of those who may not otherwise have a strong voice in shaping culture or policy.

The End the R-Word campaign was unusual in that it only had one hashtag in common use. They’ve been doing this for several years now, and have succeeded in gathering a diverse range of voices with a unified message — to stop using hurtful language, specifically the word “retarded” as a general term.

If you haven’t seen it, Switched at Birth tells the story of two families, one wealthy and one less privileged, who discover their teen daughters were switched at birth. The child from the less well-off family is deaf, and much of the show includes subplots and scenes developed around deaf culture. The deaf community and other fans of the show went all out this week with efforts to make this special episode of the show trend on Twitter to help raise awareness around deaf concerns and culture. Part of what made that succeed was connecting the episode to the Occupy Wall Street movement with the theme “Take Back Carlton”, with Carlton being the local School for the Deaf.

With women being the largest of these three marginalized communities, and with over a century behind this specific event, it is perhaps no surprise that International Women’s Day shows the largest number of spinoff events, well developed issues, and the greatest diversity of hashtags used around the conversation. Irina mentioned two hashtags in her post — #WHM and #WMNhist. Those stand for Women’s History Month and Women’s History. Closely aligned with these is #RWHP which today stands for Radical Women’s History Project, but usually stands for Rural Women’s Health Project.

Meanwhile, the actual official hashtags for International Women’s Day are #IWD2013 and #IWD13, with many also using the simpler #IWD, #WomensDay or just #Women.

It is only to be expected that issues of women’s health and violence against women surface today as highlights of the conversations around International Women’s Day, with increased calls for awareness and support. The hashtags for violence against women today include these: #EndVAW; #VAW; #timetoact; #sayucommit. The hashtags for women’s health include #WomensHealth and #SRHR (for Sexual and Reproductive Health Rights).

Related strongly to the health conversations is the broader #GenderEquality, which includes some phenomenal content.

I could go on for days with the hashtags for IWD. Instead of embedding many more tweets, I will instead share additional hashtags and hope that you can find time to explore them yourself. There are several conferences, events, and organizations actively engaged in extending the reach of IWD.

#AAUW = American Association of University Women

#bachelet = Michelle Bachelet’s speech opening the 5th Annual Women’s Empowerment and Principles event.

#EqualityMonday = United Nations Development Program initiative. This series also includes #EmpowerTuesday; #GreenWednesday; #EndHIVThursday; #EndPovertyFriday; #Democracy Saturday; #ResilienceSunday. Storify from this Monday available here.

#fem2 = General hashtag for feminism, may have begun with the Fem 2.0 conference in 2009.

#cswusnc = United Nations Commission on the Status of Women. U.S. National Committee for UN Women (USNC)

#CSW57 = United Nations Commission on the Status of Women, 57th Session

#NGOWGG = NGO Working Group on Girls

Among the initiatives and special releases for International Women’s Day are included a number of film and music events celebrating the rights of girls and women. Here are some of the hashtags being used, but if you want the free music or to view the films, you’ll have to go look.

#GirlUp
#RiseUp
#GirlRisingHero
#WhereIsGirlRising
#reasontorise
#1BillionRising
#1woman

Heard Whilst Disabled #heardwhilstdisabled

I know, I just did a hashtags post. This is special. Just read them, OK? Pay particular attention to the posts by folks with “Invisible Disabilities.” See if you can tell which ones those are.