Open Letter to a Pediatric Sub-specialist

Old postal envelope

Photo Credit @http://www.mediamath.com

Dear Doctor,

I came to your office today to meet you for the first time. I brought along my 12 year old daughter who has a variety of medical conditions. We’ve been accumulating diagnoses since she was born and at a great rate in the last few years.

As her mother, I am a typically healthy person, privileged with a body that’s never been diagnosed with anything chronic or painful. I’ve been “able” to do anything I’ve desired for the past 43 years.

When I came to your office today, we began with me filling out paperwork and paying you money. I am lucky to have insurance. I spent part of my work day and $50 so we could learn from you. I believe the insurance company will pay you additional fees for our time with you and the opportunity to learn both about the condition you are diagnosing my daughter with and the treatment options you are prescribing.

We moved in with your nurse who would weigh and measure my daughter.

We passed you on the way to the scale and the wall mounted height rod. You looked like the doctor. I thought it made sense to greet the person we were here to see with a good morning. You ignored us. The nurse measured my daughter.

We were escorted to an examination room. I received a clipboard and began responding to the review of systems form.

You entered the room. I’m not sure you shook our hands or greeted my daughter. You were holding a report in your hand. You read it over to yourself and spoke about the new condition you think she has. You asked me why we had come to you. I told you that we had not observed any issues, but had been referred by a surgeon who had told us a consult and test with you were part of his new patient protocol.

I told you another doctor had told us she did not think we had the condition you were diagnosing, so this doctor’s referral for the test was a counter to your test and diagnosis.

You shifted in your seat. This seemed to discomfort you.

You rated my daughter’s condition with a numeric scale.

I asked you what the highest rating on the scale was, so I had something to compare the number you were giving me to.

You said the scale had no upper bound.

I asked you how the rating gets configured. What measures are taken and how are they used to determine my daughter’s rating on this scale?

You stared at me. Time passed. You told me some terms and some numbers.

I asked you what the terms meant.

You stared at me. Time passed. You defined the terms.

I asked you what sorts of issues might arise during the study that would confound or complicate the data gathered. If you were the parent using the study to make meaning of a diagnosis, what questions might you have about the conditions of the study?

You barked that data had been captured about my daughter for well more than the minimum amount of time required by the American Academy of Pediatric Doctors in your subspecialty.

This didn’t answer my question directly, but it was the last question I asked.

I felt like I had to explain myself.

I felt like you did not want me to ask questions.

I felt like you wanted me to accept your diagnosis and follow up with your recommended treatment.

I had more questions and I saved them for the internet.

I had more questions and I did not ask them.

Dear, doctor, what is your health status?

Do you have any children? If so, what is their health status?

How many doctors have you visited with young children carrying multiple diagnoses?

Do you know much about my daughter’s rare genetic mutation and resulting condition? What do you know of my experiences working with world renowned doctors?

I know some about my daughter’s condition, but I don’t know everything. In fact many doctors who have tested and diagnosed and treated her do not know everything. Most of them know very little about her condition and most of them know very little about her history. Even doctors who study her condition do not know everything.

But I have lived with her for 12 years. I am well versed in her bodily history. I am also well versed in what it’s like to get inaccurate diagnoses. I am well versed in what it’s like when doctors treat her as though she has only the condition they are familiar with. I have seen her over and under dosed. I have seen her receive conflicting diagnoses. I have seen her accidentally get better equipment that better treats her symptoms because a random operator or therapist mentioned an option the doctor knew nothing of. I have seen her get the wrong medication. I have been sent to different specialists because the specialist was so sure of their diagnosis only to find out a year later they were wrong. I am well versed in what it’s like to live in a hospital for three weeks after a routine surgery sends my daughter into respiratory arrest because she is treated like a child without a genetic disorder. These are only some of my experiences.

What is hers?

I have seen my daughter’s face grow sullen as she is talked about. I have seen her frustrated by a body she was born with that seems to both transfix and distance people as they bounce between inquisitive stares, averted eyes and bright stiffly smiling teeth. Strangers work hard to speed past us while getting enough eye contact with me that I know they “admire” me and sharing enough smiley eye contact with her that she knows they feel sorry for her. But few want to know her or be her friend. Curiosity and exchange are signs of love. Smiles, questions about my daughter’s shoes or school and speed create a comfortable distance for doctors and street strangers, but a dangerous distance for me and my daughter.

I use my questions and story sharing to close this distance – often to the chagrin and frustration of doctors, educators, peers, friends and sometimes family. This is my job as a mother, a parent, an advocate and now a mentor to my daughter as she learns to self advocate in all the appointments and situations she will find herself in as a youth and adult. There will be so many times and places where people will know and feel much less than she does about herself, but will use their power and position to shame, doubt, or negate her inquiries and interests.

So where do we go from here?

This is a city where we might run into one another and doctors know doctors and one might run out of second and third opinions, so it’s important that we build a better medical community right here. We cannot simply move on. I cannot run from this. There are not infinite local options, so these are my suggestions:

First, I want you to see my daughter for the person she is. Greet her. Introduce yourself. Ask something about her.

Second, I want you to see us as people who see lots of doctors all the time. Each year, my daughter has well visits with:

A neurologist
A neuropsychologist
An endocrinologist
A craniofacial surgeon
An orthodontist
A nephrologist
An otolaryngologist
An ophthalmologist
A urologist
A prosthodontist
A dentist
A pediatrician

And now you

This does not include illness, changes, tests or additional consults.

Now, I need you to think about how that feels over time. How does it feel to get another diagnosis when you already have 8? What do you think my daughter is thinking as you talk about her and what I should do in front of her? She is staring at the floor. Is she scared to be here? She is here. Acknowledge her. Speak to her. Don’t let her get comfortable being spoken about, touched and examined without being humanized. That is a dangerous position for any human patient and for you. It denies you the opportunity to practice informed, patient and family centered medicine. It denies you the opportunity to learn about her context and adjust to her needs.

Lastly, I want you to know how much power you have to support young people moving into managing and self advocating for their own medical care. Teach my daughter how to care for herself, how to be treated fairly and thoroughly, how to ask her doctor as many questions as she can, how to talk to a doctor about her experience and her hopes, how to think critically like you do. I know you are a critical thinker and now I need you to make your exam room a place where other critical thinkers are welcome and mentored into self care and advocacy for a strong, healthy future as informed citizens.

People first,

Liz, mother to one of your patients

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Light at Night

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We breathe

in the night sky

“Lights on the tower are so pretty,”

Fresh from 8 hours in the hospital box waiting

“When are we going home?”

for someone to prod,

“I don’t want to spend the night.”

someone to report,

“My family misses me.”

and someone to report about a prod.

“I want to see my siblings.”

We move to the car in another chance to try – reminded of precarity.

Auto-pilot home I remember nights of greasy chicken with cheap beer, snuck into filthy sterile rooms when you were too small to chew as we ate refuge when nothing else seemed safe.

I take you out to your place.

It’s late.

It’s irresponsible.

We go out to your place.

And when we order, the cashier man asks how we are doing tonight. So I tell him we just got out of hospital jail and headed for our favorite dinner treats instead of home.

He was there today.

Nephew. 3 days in. Tomorrow home.

We feel this now.

The woman behind the counter who always calls you, “my friend,” leans in to ask if you’re going to be ok.

I don’t know how to answer, so I tell her you have epilepsy and today you had a seizure.

You will probably have another.

We try things and we hope that something will help us feel safe in your body. Tonight we live there sometimes alongside you.

She offers her own seizures; moments when, “I feel crazy, but I can feel them coming and I can control them and stop them. I think of something I love…chocolate, movies, anything.”

What do you love?

She will ask you next time when you are not feeling so seen.

So known.

She feels you.

I love that you can be seen by the world – unfolded in your fear to a comfort in the imbalance that surrounds us when we tell a little truth tonight.

#charlottesvillecurriculum (in the classroom)

Inspired by educators’ rapid, pro-active response to violent clashes in Charlottesville on August 12, 2017 I got together with 11 inspirational folks planning to work with some of the #charlottesvillecurriculum in Austin K-12 classrooms.

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Elizabeth Roussos, Ginger Gannaway, Elena Galdeano, Ashley Muir, Kelley Gregg, Kaylyn Brune, Amber West, Janie Lewicki, me, & Crystal Fox + missing Natalie Becerra & kris sloan who left for class 😦

We started off with J Smooth because he gets us ready to disagree productively; to name and deconstruct racism in everyday conversations.

We moved to a choral reading of Jensen’s provocative opinion editorial “Why the US Will Never Transcend White Supremacy” in an August 20, 2017 issue of the Austin American Statesman (curated by our savvy Literacy Circle Mentor Ginger Gannaway), as he illustrates the ways US economic prosperity is built on a legacy of white supremacy. He challenges teachers to deconstruct and counter this white supremacy in their classrooms. We think high school students could have a thoughtful discussion about this op-ed and might identify the myriad places they see the legacy of white supremacy operating in society and daily actionable steps.

To locate the #charlottesvillecurriculum activities in time and place, we analyzed a Southern Poverty Law Center timeline of confederate monument installations timeline-whoseheritage

and an infographic map of states where confederate monuments are located.

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We listed additional events we think lend context to the August 12, 2017 violent clashes that resulted in the injuries of 19 and the death of 1 counter protestor.

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We moved to an activity titled, “The Story Behind the Photo” created by @jarredamato, which asks us to caption and predict the story behind this photo.

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Amato asks us to read a first person account from one of the photo’s central figures, Corey Long, and invites us to discuss what we can learn from primary as well as the importance of interrogating their production.

We segued from small groups to sharing ways we would integrate, modify, build on and beyond this activity.

We closed distributing children’s and YA books and another photo analysis activity curated from lists in the #charlottesvillecurriculum feed. Teachers also picked up a copy of Southern Comfort by James McPherson who summarizes and locates some of the crucial arguments in Gary Gallagher’s The Myth of the Lost Cause and Civil War History.

We think this video narrated by Colonel Ty Seidule, West Point Professor of History is a useful text for translating some of the article’s ideas about Civil War myths for students.

I look forward to our next sessions together this semester and would love to hear stories of #charlottesvillecurriculum in YOUR classrooms!

 

 

 

Revising Texting+ Rules with Students?

modern romance coverThis summer, I’ve been re-reading Aziz Ansari and Eric Klinenberg’s Modern Romance for the Texas Literacy Teacher Circle (aka English Eddies) at St. Ed’s. With my first read, I just dove in and enjoyed the mix of sociology, humor, and cultural analysis. And I can’t deny that I’m fascinated by the ways new technologies spark new literacies necessary for things like romantic love. Reading this time, with literacy educators and K-12 students in mind, I’ve had my first fun classroom idea when I hit page 57. Aziz and Eric share this bulleted list of texting “rules”:Screen Shot 2017-08-02 at 2.47.00 PM

Small groups of students could be invited to make their own lists of texting rules or revise this one. Teachers who have classroom conversation rules create and revise group guidelines with students all the time. Noting differences in various groups and individuals’ rules would lend insights into differences in friend and family practices beyond the classroom. Teachers could share a personal experience where they learned new rules for participation in a community and invite students to do quick writes about learning “the rules” for social media participation in their favorite online communities. People uncomfortable to share an experience could imagine rules they wish there were (or weren’t) and explain why. Students could list and critique social expectations for gender, age, race, class, etc..

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What rule making, revising or imagining activities does this spark for you? What new literacy learning experience might you share? Stay tuned for mine…

And if you’re reading with us, what quotes are sparking ideas for you?

Fake News Invasion?

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Photo Credit @freepressaction

Fake News is Old News 

While the phenomenon of Fake News screamed into headlines with the Comet Ping Pong Pizzeria shooting, media literacy has been around as long as people have been constructing adolescence as distinct from adulthood. Ethnographer Greg Dimitriadis teased apart some of the perspectives people bring to popular culture and media literacy – perspectives that inform approaches to youth, teaching, and learning. For example, media literacy movements began with fears of people (often positioned as poorer, younger, or slower) being duped into believing whatever they were being told or sold (the protectionist stance). But for ethnographers of education and youth culture like Jo Ellen Fisherkeller (author of Growing Up with Television), media literacy needs to be more and can be problematic. The ethnographic stance works to meet youth where they are; acknowledging the skills and positive (including pleasurable) relationships people young and old construct with media texts (the ethnographic stance). Some critical educators work to wed these stances together with an approach to media in the classroom that balances pleasure with critique and deconstruction of media as both a text and a corporate institution (the critical pedagogy stance). While this is a simple way to parse approaches and there are others including hybrids educators might ascribe to, this is a productive place to start.

So What is Fake News?

Many have been quick to blame social media sites (like Facebook where the Pizza-Gate Conspiracy story and many others circulated during the 2016 election) and the open web for the proliferation, circulation, and ubiquity of news about fabricated events. Stories like this one in the New York Times, explain how anyone (like Cameron Harris) can sit down, write, and publish widely read tales (including photographs) of happenings that never transpired.

But reporters at Vox point out that, while social media may be one place Fake News grows legs, real news outlets are heavily implicated in creating, what they dub, “false equivalence” between the two candidates and the scandals surrounding their campaigns. In this instance, false equivalence veiled what was at stake for the majority of the voting population. They argue in favor of a closer look at the ways real news works too.

This means we have to vet the texts we read, but we’ve also got to learn about the ways all texts get constructed and disseminated.

So How do I Get Started?

Reading any text (nursery rhyme, cereal box, mother’s day card, online news story, work of art, picture book, science textbook, etc.) with these questions from Project Look Sharp via Common Sense Media is one way to start:

  • Who made this?
  • Who is the target audience?
  • Who paid for this? Or, who gets paid if you click on this?
  • Who might benefit or be harmed by this message?
  • What is left out of this message that might be important?
  • Is this credible (and what makes you think that)?

Questions like these layer classic questions about: Media Mode Audience Purpose and Situation (that make rhetorical analysis accessible to K-12 students) with critical questions about industry, representation, impact, and authority. A video like Hate Machine is another way to kick start the conversation about text construction and dissemination:

Teachers in middle and high school classrooms might find this 10 question checklist for Fake News Detection from the News Literacy Project a quick place to start. It begins asking readers to gauge their emotional investment in the truth of their reading, includes online activities like reverse image searches, and touches on the ways bots can dominate online forums.

What Should I Be Ready for?

When people start to talk about harm and textual authority, the conversation can get sticky; particularly for people from marginalized or underrepresented populations. Marginalized voices are the voices rendered invisible, demonized, and mis-represented in much of mainstream media. In “Did Media Literacy Backfire?” media scholar danah boyd outlines some of the questions critical, inclusive, responsive, anti-racist, allied educators need to be asking along the way. She reminds us about the limits of medical “science.” She reminds us of the necessity for information and expertise if we are to live in a functioning democracy that promotes equity and social justice. She reminds us of the need to reimagine traditional education practices:

We cannot fall back on standard educational approaches because the societal context has shifted. We also cannot simply assume that information intermediaries can fix the problem for us, whether they be traditional news media or social media. We need to get creative and build the social infrastructure necessary for people to meaningfully and substantively engage across existing structural lines. This won’t be easy or quick, but if we want to address issues like propaganda, hate speech, fake news, and biased content, we need to focus on the underlying issues at play. No simple band-aid will work.”

One of the quickest ways to shake things up is to invite youth to investigate their own questions, make their own media, and share that media with audiences beyond the classroom. The Rock Your World project based curriculum by Creative Visions is a free online resource for lesson plans AND a showcase for youth social issue action projects. Lessons take youth through the process of identifying an issue of personal and social importance, informing themselves, and selecting a format for composing a persuasive text (letter, campaign, song, film). The curriculum’s lessons are open enough for any teacher to modify, include links to alignment with Common Core State Standards, and curated resources like mentor texts and places for students to publish and disseminate their finished work widely.

Look to future posts for tips and questions to consider as youth publish their work beyond the classroom and engage in critical inquiry projects.

I would like to thank Ginger Gannaway for help curating some of the above resources.

Race, Class & Gender in One Morning

Yesterday afternoon we were sitting around working on homework and looking for something to read online. We stumbled upon this reading levelable and spanish translatable gem about intersectionality via newsela thanks to tolerance.org.

This morning, Nina (freshly turned seven) lays down on my bed while I’m getting dressed and declares, “People with white skin aren’t all equal.”  I acknowledge that people with white skin don’t all get the same chances to do things and some of this has to do with money, where they live, the schools they get to go to, but we have to talk again about intersectionality.

This helps.

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An hour later.
N: “We are riding in money.”
 
L: “What do you mean?”
 
N: “This car cost money. Our clothes cost money. We eat money. Everything costs money. Not everyone has money.”
[2 hours later returning from the doctor and driving in the car we are stopped at a stoplight and an African American woman walks across the street holding a poster that declares “WE ARE ALL EQUAL”]
 
N: “That’s true, but not true.”
 
L: “What do you mean?”
 
N: “People have to be treated equally. People aren’t all treated equally because of skin color or size.”
 
L: “What are we going to do about it?”
 
N: “I’m working on it.”
I am looking forward to tomorrow.
To be continued…