Tag Archives: stigma

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

Stigma Barricades Ability: Investing in Ability at UM

Investing in Ability, UMich

I truly cannot express how delighted and proud I am of the University of Michigan, their Council for Disability Concerns, and especially my dear colleague Anna Schnitzer, for their annual hosting of a rich series of events focused on issues at the intersection of disability and ability. This year, the special topic of focus is: “Stigma, Stereotypes, and Bullying.” I will be hosting one of the events (more on that shortly), but I wanted first to introduce the entire series of events, and highlight resources from past events and one of the early events in this year’s series.

Investing in Ability: Main Page: http://ability.umich.edu/iaw/

A text list of events:

2015 INVESTING IN ABILITY: Stigma, Stereotypes, and Bullying

One of this year’s speakers at a previous event, Michigan Supreme Court Justice Richard Bernstein.

Richard Bernstein, Investing in Ability, University of Michigan Oct 21, 2013 https://www.youtube.com/watch?v=X8akD5vLLhA

Investing in Ability events explore stigma, stereotypes and bullying for persons with disabilities.

Now that you know how to find the rest of the events, here are the highlights from one earlier this week, a very passionate and information-rich presentation on the role of Stigma in Muslim Mental-Health, and how that has very real impacts on all of America.

Stigma in Muslim-American Mental Health https://storify.com/pfanderson/stigma-in-muslim-american-mental-health

The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.

* THE BLOGGESS

* EXPECTATIONS

* INTERACTIONS

* JUDGMENTS

* SENSATIONS

* EXPERIENCES

LAST BUT NOT LEAST

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

Pic of the day - Detroit Opera House

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

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

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

La Traviata

La Traviata. Postcard image courtesy of NNDC.

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

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

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

La Traviata Death Scene

La Traviata Death Scene, photo courtesy of Amanda Sullivan

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

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

La Traviata - Full Cast

La Traviata, Cast, photo courtesy of Amanda Sullivan

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

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

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

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

After a sad opera


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

Blue is for Borgs (On WAAD), Let’s Walk in Red Instead

Borg cyborg prosthetics Walk In Red

It happens every year now. I end up having a gentle, delicate but firm conversation with someone (individual or organizational representative) who really, REALLY want to do something to be supportive and help people with autism, and to do so they have jumped on the bandwagon of the “Light it up Blue” movement founded by Autism Speaks. They mean well, but they don’t realize the broader context.

BLUE = Autism Speaks

World Autism Awareness/Acceptance Day
World Autism Awareness/Acceptance Day

When the context is provided, they either say, “I didn’t know,” or “Don’t we get brownie points for good intentions?” or “Well, it might mean that for you, but not for us,” or “That’s only true in America,” or “It’s too late, we already committed.” The folk who say, “I didn’t know” are usually actually listening, and will make a change in the future. I’m not so sure about the others. I’ve written letters to companies that are “going blue” and collecting funds to donate, trying to make them more deeply aware of the impact. There are companies where I no longer shop, and have told them why. Not that it really has any significant impact, from what I can tell. And I’m afraid that each complaint, like this one, ends up instead feeding the adoption of the campaign, creating free publicity, and feeding negative messages about autism that lie at the heart of what Autism Speaks does.

Here let me explain. Briefly.

SELECTIVE TIMELINE OF AUTISM RIGHTS MOVEMENT

1970 – April chosen as National Autism Awareness Month in the United States by the Autism Society.
1995 – First Autreat, November.
2002 – Autism Awareness Year in the United Kingdom
2002 – Autism Sunday, second Sunday of February, launched in London
2005 – First Autistic Pride Day, June 18th, in Brasil with the theme “Acceptance not cure”
2005 – First Autscape began July 26, near Somerset, UK
2006 – Autism Acceptance Project founded by Estée Klar
2007 – World Autism Day designated by the United Nations
2008 – First World Autism Day, April 2
2010 – First Light It Up Blue (#LIUB) Campaign launched by Autism Speaks
2011 – Autism Acceptance Day created by Paula Durbin Westby
2015 – First Walk in Red campaign (supported by Paula Durbin Westby).

Walk In Red

You see that autism advocacy has a long and strong history, before and after the first efforts by Autism Speaks. What has happened with the Autism Speaks efforts is basically that they have, well, co-opted the idea of the World Autism Day for awareness and fundraising of their own projects. I’m serious. Here, look at some definitions of the word “co-opt.”

Free Dictionary: co-opt
“1. to choose as a member.
2. to assimilate or win over into a larger group.
3. to appropriate as one’s own; preempt.”
“3. To take or assume for one’s own use; appropriate: co-opted the criticism by embracing it.
4. To neutralize or win over (an independent minority, for example) through assimilation into an established group or culture: co-opt rebels by giving them positions of authority.”

Merriam-Webster: co-opt
“: to cause or force (someone or something) to become part of your group, movement, etc.
: to use or take control of (something) for your own purposes”
“2 a : to take into a group (as a faction, movement, or culture) : absorb, assimilate
b : take over, appropriate (a style co–opted by advertisers)”

Autism Speaks have a LOT of money behind them, connected with a lot of famous folk, and have built that into such a strong brand recognition that when you search for Autism Day in Google, you have to actually scroll way down to find the links to the United Nations, the folk who are REALLY behind it. All of the top leading links about it are for Autism Speaks and their fundraising efforts.

Google Search: Autism Day

Whoa. And again, WHOA. And the whole thing with “Blue”? That was to match the Autism Speaks logo. Yes really. So, even if people aren’t aware of it, even if they’ve forgotten, every time someone connects “blue” with “autism” they are creating more support and awareness for the organization Autism Speaks, their fundraising campaigns, their marketing, and their agendas.

Is that such a bad thing? After all, they are a charity, and the money still all goes to support people with autism, right? Wrong.

Not to say that Autism Speaks do nothing worthwhile (some of their Toolkits are genuinely useful), it is the organization’s underlying tenants are viewed with alarm within the larger autism advocacy community, who don’t necessarily have the millions of dollars to get eyes on their ideas. Here is a tiny selection illustrating some of those concerns.

Autistic Self Advocacy Network (ASAN): 2014 Joint Letter to the Sponsors of Autism Speaks

John Elder Robison: I resign my roles at Autism Speaks

ASAN Vancouver Disability Day of Mourning: Introductory Speech

Forbes: Why Autism Speaks Doesn’t Speak For Me

The Daily Beast: “Autism Speaks”- but Should Everyone Listen?

Boycott Autism Speaks

Autism Women’s Network: Is Autism Speaks a Hate Group?

The controversial and contentious dialog seems to center on these issues.

Awareness versus Acceptance

Awareness vs Pride

Assimilation versus Inclusion

Stigma versus Respect

Now, let me go back to the beginning of this post. The Borg. What the community of autism advocates is seeking is to celebrate their skills, talents, uniqueness. The United Nations theme for World Autism Day this year focuses on the value of persons with autism as employees (click on the word “inclusion” above). This has also been celebrated recently by the Wall Street Journal and Entrepreneur. In its long history, the autism advocacy movement quickly shifted from simple “awareness” to more active and joyful celebrations of the value of persons with autism. I’ve been tracking the Autism Speaks controversy for a very long time. I don’t need to explain here how what they do tends instead to undermine those happier and loftier goals.

I do have a personal stake in this. My son has autism. My brother has autism. There are some who think I have autism and was just never diagnosed. I wouldn’t be surprised. Last time I was home, I rescued this beautiful piece of blown glass made by my autistic brother, who was preparing to discard it as not meeting his standards. It wasn’t good enough. I love it, treasure it, and keep it in my office where I see it everyday.

Blown Glass (discard)

Also last time I was home, the pastor of my brother’s church made a point of telling me how important and highly valued he is in their faith community. I don’t want to hear anyone tell either my brother or my son that they aren’t good enough, or that they need to be assimilated. I have many friends who are on the autism spectrum. Some of them are even non-verbal, with what is considered severe autism. I tell you, when my friend who is non-verbal is complaining on Twitter about something her husband said to her, knowing that she couldn’t argue back … well, let’s just say, I don’t think of her as being non-verbal.

What is it that we want of people with autism? Do we want to treasure them and celebrate their uniqueness? Or …

“We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. … You will be assimilated.”

If you still think of “blue” as the color of autism, you may not even be aware how it happened, but you have already been assimilated.

MORE ON THE RHETORIC OF AUTISM

Paul Heilker and Melanie Yergeau. Autism and Rhetoric. College English 2011 73(5):485-497. http://www.jstor.org/stable/23052337?seq=1#page_scan_tab_contents

Autism and Rhetoric (a Prezi synthesizing the high points of the Heiler & Yergeau article).
https://prezi.com/kz2mvlhp-7gz/autism-and-rhetoric/

Alicia A. Broderick. Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse. Disability Studies Quarterly 2011 31(3). http://dsq-sds.org/article/view/1674/1597

Paul Heilker. Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 2012 32(4). http://dsq-sds.org/article/view/1756/3181

Emily Malabey. How the Rhetoric of Autism Speaks Has Hurt Autistic People. Council for Autism and Neurodiversity November 15, 2013. http://www.autismcouncil.org/?p=2802

PF Anderson. Beyond “Light it Up Blue” — Maybe “Light it up Gold”! https://etechlib.wordpress.com/2014/04/02/beyond-light-it-up-blue-maybe-light-it-up-gold/
(Check out the Storify of Ibby Grace presenting on this)

A Culture of Blame: Stigma in the ER (Rare Disease Day 2015)

Emergency Room Visit (November)

Today is Rare Disease Day. I love Rare Disease Day. I’ve loved it for a long time. Usually I try to blog something upbeat, useful, and inspiring (2014, 2013, 2013b, 2012), but that’s not what’s going to happen today. Today it is time for a sad, disturbing story; one of stigma, assumptions, miscommunication, misunderstanding, anger, hurt, laughter, pain; all nicely wrapped up as a great example of social media gone wrong.

Something I know from personal experience is that when someone has an undiagnosed, misdiagnosed, or mismanaged health care condition, they tend to get to a point where they spend an unusual amount of time in the Emergency Room. These are, shall we say, usually not a person’s happiest moments. People with rare conditions are more likely than not to have gone through a period of time in which their condition was not properly diagnosed. There are excellent reasons for this, with the largest one being that clinicians are taught explicitly to err on the side of assuming their patients are relatively ordinary, rather than extraordinary or unusual, or rare. This is included in medical slang as the word “zebra,” implying that people’s diagnoses are more likely to be a “horse.”

Rare Disease Day 2015
Rare Disease Day 2015, by Violent Bloom.

Thus, the patient who genuinely IS rare, while statistically unlikely to appear under the care of any particular healthcare provider is rather more likely to have experienced a great deal of misguided, inappropriate, and ineffective care. They are also likely to have experienced these trained-in assumptions presenting in uncomfortable ways which undermine them as a credible person, from “if you’d just try” to plain old rudeness to being told “it’s all in your mind.” And when healthcare professionals find it hard to believe the suffering person, often their friends, family, colleagues, and acquaintances follow suit. These comments, rarely intended to be hurtful, but hurtful nonetheless, have been being captured via Twitter with the hashtag #heardwhilstdisabled.

Twitter: Heard Whilst Disabled: https://twitter.com/hashtag/heardwhilstdisabled?src=hash

I learn a lot about compassion and the real lives of persons with chronic illness from conversations on Twitter, on Facebook, and from lurking in support groups for various conditions. Usually, I joined the group when I myself was misdiagnosed with some condition, as part of my own rare disease journey (although mine turns out not to be so terribly rare, just rarely diagnosed). There are a lot of these groups, countless ones. Even just looking for chronic pain groups on Facebook, there are easily close to 100 of them! In these groups (and on Twitter, and in other social media spaces), something that comes up almost every day are stories of someone who went to the emergency room, and was unable to get the care they believed they needed and deserved because they were assumed to be a) drug seeking; b) attention seeking; c) misrepresenting their symptoms; d) liars; e) mental health patients (which is too often interpreted as not a credible reporter, or the pain “is all in your head”); f) that they don’t really have the condition they say they have; g) … well, it goes on and on.

Yesterday, in one of these support groups, someone alerted the rest of the group to a blogpost written last week by an emergency room nurse that has taken off in a rather viral way. And it is spreading. People are sharing the post to other support groups. Patients are up in arms. They are complaining to her employer. They’ve phoned her supervisor. They are filing official complaints. It’s all a nasty piece of business. Meanwhile, the nurse in question posted the link to her own Facebook page in a jocular way, with public viewing permissions, and various healthcare colleagues and friends have gone to town with it, joking, sending virtual high-fives, and sharing it. Widely. Lots of comments and around 50 shares. The blogpost itself has, as of this writing, well over 115,000 views, according to the counter on the page. Just to make it even more … awkward, the blogpost itself and the comments on the Facebook post both imply that this was written while the nurse was on duty at her job, as triage nurse in the Emergency Room.

trauma blur
Trauma Blur, by Mike Beck

OK, brace yourself. Here’s the post that has the patient communities so upset, and the nursing community so entertained.

Wainwright-Morrison, Kimberley. Confessions of an ER Nurse: This is probably your fault, not mine. Feb. 23, 2015. http://www.kimberlywainwright-morrison.com/413380011/2549810/posting/confessions-of-an-er-nurse-this-is-probably-your-fault-not-mine

Where does this go wrong? In the title, as soon as the word “fault” is used. “Fault” implies “blame.” Placing blame is a great way to attract blame. It immediately creates an us vs. them mentality. Because this is written by a nurse, the title alone will tend to push patients to feel defensive, and to likely misunderstand the intended message of the post. If the point of the post is to actually change patient understanding of the emergency room protocols, policies, and capabilities, it needs a new title. If the goal is to change patient behaviors, ditto. Some of the (presumed) nurses on Facebook suggested giving every patient a copy of this post at the triage desk. Hmmm, might want to rewrite it a bit first.

The focus of the Wainwright-Morrison post is on the non-compliant patient, a topic which is kind of a pet peeve of mine. Not to diverge too much (and I’ll try to make a separate post on ‘noncompliance’), I’ve been writing about this for a very long time. In our 2002 book, I argued in favor of the idea that “patients have reasons for being non-compliant,” that calling patients non-compliant is actually patient-blaming and unproductive, and that informed consent implies people deserve the right to make decisions which the experts might not agree with.

“Our personal belief is that it is neither realistic nor ethical to attempt to control or proscribe access to health information. Nor is it realistic or ethical to legislate or prescribe what health care consumers do with health information once they find it.” PF Anderson. “Introduction: Empowering Patients.” Anderson & Allee. Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web.

The problem with the term “non-compliant” is that as soon as that phrase enters the conversation it places blame for the patient’s problems on the patient themselves. It also absolves the healthcare system of the need to find out why the patient isn’t “complying.” Did they not understand the directions? Did they understand but disagree with the instructions? Does the patient believe that a different medicine or treatment would be more appropriate? Does the patient have the support system in place that would make that treatment even possible? Could they not afford the medicines? Could they not get to the pharmacy? Could they not arrange delivery? Did they believe that they already have another medicine they think will do as well? Did they take the medicines at the wrong day/time/place? In the blogpost, there is a stated assumption (judgment?) that if a patient “can’t afford” the medicine, that they are actually lying and choosing to instead spend money on other optional pleasures.

“It is not appropriate for you to save your last $30 for your manicure or your beer or your cigarettes. You can afford a prescription. MAKE IT WORK. Everyone else has to take care of themselves; I think you can also manage.”

Which leads to more questions — does the patient actually have the executive function capabilities that would allow them to control the impulses and “make the right choice”? Is the pain or disability or condition effecting on their memory? Did the healthcare provider explain things in a way that the patient actually understood? Did they confirm that understanding? Did the patient just nod and say, “Yes,” whether they understood or not?

Now, despite my admitted bias against a focus on the “non-compliant patient,” part of what drives me in this direction is in an effort to counterbalance the enormous numbers of folk actually working in healthcare who feel the opposite. I suspect that deep down, we are saying the same things, just in different ways, but the way you say a thing, the way an issue is framed, can completely change how it is heard, how solutions are designed, and how effective those solutions might be. And obviously, there are a LOT more people who feel differently than I do about the idea of calling patients non-compliant. Most of them have hearts as big as all outdoors, and they GENUINELY really want to help patients and help make their lives better.

Which is the case for Ms. Wainwright-Morrison. She is a good person. She loves her job. She means well. She works hard. She tries to make a difference in ways that count. She tries to help people, both at work and on her own time. She takes time outside of work to help multiple charities; she is on the coordinating team for “Giving More” a non-profit focused on helping those in need. In her bio on the Giving More site, Ms. Wainwright-Morrison describes herself as “passionate about educating her patient population in regards to making their health and compliance a priority in their lives.” I respect that. I respect what I believe she is trying to do, hoping to accomplish. I do not feel that this particular blogpost succeeds in moving those goals forward.

In the patient forums, I’ve been reading post after post that takes the blogpost apart, line by line, example by example. Patients are telling story after heartbreaking or uplifting story of times when what happened in the emergency room in their lives does not match the descriptions provided by Ms. Wainwright-Morrison. Patients with the conditions she explicitly addressed (such as high blood pressure and sickle cell anemia) were particularly offended.

On the other hand, there are many other nurses, healthcare providers, and emergency room workers are emphatic that the blogpost accurately describes some common categories of patients. Many feel strongly that Ms. Wainwright-Morrison is being honest, accurate, and should be protected from the public outcry against the blogpost.

One particularly sad bit of collateral damage from this was a nurse with chronic pain in one of the support groups. She tried to explain to the other patients in the forum that what is described in the blogpost reflects standard policy in most Emergency Rooms, that there is a HUGE disconnect between what patients expect from the ER visit and what ER teams are actually allowed to do. She also explained that nurses tend to stick together, because they understand what they go through in their job, something that may not be understood by either patients or doctors. For this, she was banned from the support group. This breaks my heart.

So, this is sad, sad, sad, all the way around. Patients are hurt. Nurses are hurt. The reputation of the hospital is being hurt. The structure and nature of the support group(s) is/are being damaged. I don’t see anyone coming out ahead with this the way it is taking shape right now. It’s a lose-lose all the way around. People are on the attack or on the defensive. The conversation is polarized, instead of becoming collaborative and solution-focused.

I do NOT want to see Ms. Wainwright-Morrison lose her job, unlike some others, because this is a problem that is rampant throughout healthcare, because she was and is being encouraged to hold these opinions by the culture of her institution. I would like to see solutions being focused at an institutional level instead of individuals. Just because these opinions could cause serious reputation problems for her and her institution does not mean that making her a scapegoat would be a productive path to follow. Actually, I suspect the reverse. As long as institutions are permitted to “address” systemic cultural attitudes and issues by making scapegoats of individuals, the underlying attitudes will never change. Behaviors might change, in public, but it won’t actually support REAL change, the kind that is needed.

We need change. We need cooperation and collaboration in changing from an assumption of “non-compliance” to discovering and addressing the barriers to healthcare solutions and treatments for each person.


MORE LINKS

Rare Disease Day: http://www.rarediseaseday.org/
– Rare Disease Day Flickr Stream: https://www.flickr.com/photos/rarediseaseday/
– Rare Disease Day US: http://rarediseaseday.us/
– Rare Disease Day Virtual Swag: http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials

NIH: Rare Disease Day: http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day

Global Genes: Rare Disease Day: http://globalgenes.org/world-rare-disease-day/
– Global Genes: RDD Virtual Swag: http://globalgenes.org/wear-that-you-care/
– Global Genes: Genes and Jeans (Awareness Ribbon): http://globalgenes.org/blue-denim-genes-ribbon/


UPDATE March 5, 2015

DELETED: The posting in the original support group site.
DELETED: The patient posts and commentary to the hospital’s Facebook page.
DELETED: The original blogpost.
DELETED: The entire domain name for the nurse’s blog.

I don’t know what happened with the nurse. Of course, I kept copies and screenshots, just in case something like this happened, but I still feel this is unfortunate. I thought this had the potential to be an opportunity for learning & conversation & change. That’s unlikely now. And that’s sad. We need the change, the conversation that leads to thinking differently, hearing each other’s side, learning to understand the other’s point of view. We don’t need bullying. We don’t need silence around these issues. What we need is understanding, mutual understanding, and the opportunities to create understanding.