Tag Archives: disability

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

#ADA25! Tech + Touch + Targets: Part Three, “Are We Done?”

SL15: VAI: ADA25

The first post in this series focused on the White House’s #ADA25 celebration and how high tech can sometimes lead to high touch, improvement of quality of life and connections. In the second post, the focus shifted from the national to the hyper-local, with the new Amtrak technology innovation in Ann Arbor that we hope will impact on rail accessibility nationwide. In this third post, I’d like to introduce you to Virtual Ability, a virtual world space that is home to a global community of persons with all kinds of disabilities

VIRTUAL ABILITY IN SECOND LIFE

Virtual Ability, Inc. (VAI) has, throughout their existence, facilitated access to resources and training for persons with disabilities around the world. This includes personal one-on-one support as well as informational, educational, advocacy and awareness events for their audience. These events engage an international community around disability advocacy. Naturally, the 25th anniversary of the signing of the United States’ Americans with Disabilities Act was not overlooked, with related activities planned for the weeks before and after the actual date. Because of the international nature of their community, events are often scheduled twice, to enable access from different hemispheres.

SL15: VAI: ADA25

Because of the complex range of disabilities supported within their community, information and presentations for their events are offered in text and audio, to support those with or without hearing as well as those with or without sight. This is standard practice for them, and a model that clearly should be adopted for webinars and livestreams and other multimedia online events. What can I say? VAI is ahead of the curve, and committed to doing it right if at all possible. FYI, they used to offer a consulting and testing service to advise organizations providing online content, and providing access to a group of engaged testers with a wide range of access challenges. Very, very valuable.

The VAI events and conversations were hosted and moderated by Gentle Heron, who also provided the voiceover for presentations provided in text.

SL15: VAI: ADA25

For the actual day of the anniversary, VAI offered four events. Two were showings of videos about the ADA then(1) and now(2), with community conversations about them; the other two were formal presentations, one about strategies and resources for personal disaster and crisis preparations (which I hope to blog about as a separate post), and another about the bare bones basics of what persons with disabilities can and should expect (and REQUEST) for accessibility for online content from organizations in the United States, how this varies globally, and why there aren’t any such guidelines for virtual world online content. This last was basically a user’s guide to WCAG, the first presentation I’ve seen like this. Most WCAG presentations are for web developers, instructing them on what to do. It is rare to see a presentation for persons with disabilities explicitly on what WCAG means for them.

SL15: VAI: ADA25SL15: VAI: ADA25
SL15: VAI: ADA25SL15: VAI: ADA25

The question that came up over and over through the day’s events was, “Are we done yet? What’s left?” It’s been 25 years, we’ve come a long ways, but there is still a lot left that needs to happen for true equality and access. Me, in real life, I was listening to these conversations sitting on my couch wearing a t-shirt that said, “Disability Rights ARE Civil Rights.”

#ADA25 TshirtDisability Rights ARE Civil Rights

The conversation was urgent, engaged, informed, and educational. People talked about the need for more accessible modes of transit; new technologies that may help the homebound get out into public life (especially exoskeletons and the Rewalk System, examples of persons with disabilities in leadership roles that influence policy for others; how the United States leadership in disability rights has influenced access and expectations in other countries; the looming cuts to social security income (SSDI) for persons with disability, and the potential impacts (“Many of us are foregoing meds already”). Ironically, the topic of foregoing meds appeared the next day in one of my Twitter chats.

This post focused on #ADA25 in virtual worlds in part because this powerful way of using technology to build community remains drastically undervalued and overlooked. That doesn’t mean there aren’t other ways in which online social spaces are being used to create community, support, and opportunity around these issues. Just take a look at #spoonies, #SpoonieChat, #a11y, #AXSchat, and the #ADA25 hashtag itself. Many of the same issues and concepts brought up in the VAI conversations and events were echoed in the Easter Seals #ADA25 Twitter chat, #ADAtoday.

If any of this intrigues you about the potential for how virtual worlds, online environments, and related technologies can support individuals and communities with disabilities, you might want to also take a look at this recent video describing the VAI community.

#ADA25! Tech + Touch + Targets: Part Two, “Our New Technology”

#ADA25 Amtrak New Accessible Technology #a11y

To continue the series on “what I did for #ADA25,” I’d like to talk about the very exciting event here in town last week, in which Ann Arbor sets the stage for a national high speed rail system, and access for persons with disability is at the core of making this possible.

#ADA25 Amtrak New Accessible Technology #a11y

AMTRAK

The event was the ribbon cutting for the new disability-accessible platform at the Ann Arbor Amtrak station.

“New disability-accessible platform opens at Ann Arbor Amtrak station” http://www.mlive.com/news/ann-arbor/index.ssf/2015/07/new_disability_platform_opens.html

The event started out with the mayor, Chris Taylor, describing the importance of the University of Michigan Health System and hospitals in providing advanced health care to the residents of the State of Michigan, and how critical accessible rail transport is for supporting this.

Lt. Governor Brian Calley noted, “Acceptance & awareness are important, but inclusion is a game changer.”

Richard Bernstein, Judge of the Michigan Supreme Court, waxed eloquent, clearly joyful and delighted with this innovation. You can hear his full remarks on Soundcloud.

Joe McHugh (Amtrak’s Senior Vice President) described this as “the flagship of our new technology,” continuing with the vision and possibilities that would come from this.

Joe really meant technology, too! The new boarding platform is retractable, and extends toward the train when in use. The Amtrak press release describes it as “The platform mechanically extends toward the train, bridging the gap created when a level-boarding platform is needed. This next generation of passenger-focused technology will allow America’s Railroad® to deliver a modern passenger railroad that is accessible to all.” That wasn’t the limit of the tech, either. In addition to designing the platform, the interactive portions of the tech, they also had to design manual tech to support the process in case of problems with the automated portions or for situations that require special extra support.

#ADA25 Amtrak New Accessible Technology #a11y

As with all ribbon-cutting events, the actual story started long long before. Or stories, I should say. This event sprang from the intersection of many stories, many people’s experiences. There are the local folk who fought for a better way to take the train, and helped make people aware of the reasons why it should start HERE. There were wheelchair passengers who complained about being put on a jack, hoisted into mid-air, and left dangling in the rain while the station staff try to get the logistics sorted out. There were the Amtrak staff who helped people with luggage, moms with strollers, elderly folk climbing the narrow stairs into or out of the Amtrak cars.

The story that resonated most powerfully with me was told by Richard Devylder, the U.S. DOT’s Senior Advisor for Accessible Transportation.

#ADA25 Amtrak New Accessible Technology #a11y

Richard was born without arms or legs. The combination of his experience, his intelligence, his connections with the community of persons with disabilities all help to inform his position and influence change. And when the opportunity presents itself, he absolutely will go for the brass ring.

That’s kind of what happened one day a few years ago. Richard described a room full of transportation higher ups. He asked, “Well, do you want to see high speed rail in the United States?” Yes, yes, yes, they all did. The next thing Richard said? “Then you have to find a way to let people like me board the train in less than 15 minutes.” BOOM.

That was one story. He had another good one. Richard described one day when he was trying to get on the train, and a ramp had been set up to allow him to board. But he couldn’t even get on the ramp because it was so crowded with people. Elderly with walkers. Parents with strollers. People with heavy rolling bags of luggage. Part of him thought, “Hey, why are all these people blocking my ramp?” Immediately he realized it is because all of them also needed a ramp, and the one provided for him was the only one there. BOOM #2!

We need ramps for boarding trains absolutely as much as we need curb cuts. The next ADA25 story I’ll be telling is about a group of people in virtual worlds. They were pretty impressed when I told them about this new Amtrak platform. Then they asked, “But why did it take 25 years? And why is there only ONE in the entire United States?” More on that in the next post.

The actual ribbon cutting, with Gary Talbot as the honored local person who pushed the hardest to make this happen.

And then people could board!

#ADA25 Amtrak New Accessible Technology #a11y
#ADA25 Amtrak New Accessible Technology #a11y


Updated to include Gary Talbot’s name.

25th Anniversary of the Americans with Disabilities Act: A Personal Timeline [#ADA25]

ADA 25th Anniversary

The 25th anniversary of the signing into law of the Americans with Disabilities Act is this week. Disability, accessibility, and usability are frequent topics in this blog. I can’t let this pass without a post (despite being rather delinquent with posting since our move into our new library, but more on that another time). But what do I have to offer? There are countless people around the country writing about what has changed since the ADA came into effect, and how much remains to do. There are organizations devoted to #ADA25 with toolkits for organizing your own events. There are celebrations at the White House and most of the state capitals, and beyond. (Resources and links towards the end of this post.) So what can I do? Perhaps just share my own stories of disability experiences in my own life.

MY PERSONAL DISABILITY EXPERIENCE TIMELINE

These are mostly stories from long before the ADA was signed into law. Back then, having a disability was shameful and stigmatized, denied and hidden if at all possible. Accommodations wasn’t even a concept that most people could hold in their mind. The language used to discuss disabilities was stigmatizing and hurtful, at best. You had to have a thick skin. Then, as far as we knew, my family was all able-bodied. We know better now. Several of us in my family have something not quite right with our bodies or minds. I suspect this is true for many families. The families I’ve met with extreme good health are often from cultures where disabilities is still heavily stigmatized, so I’m never quite sure if they are truly as healthy as they say, or if they are also in denial.

Eating sorrel at recess

I was in grade school, probably 2nd grade. There was a red-headed boy with freckles who was new to our class and a lot bigger than everyone else. He had been held back because he couldn’t pass the grade, so he was taking 2nd grade over again. His parents had transferred him to the Catholic school hoping that he’d get more support at a private school than in the public school system. These days we wouldn’t hold the kid back, but would have them tested for a learning disability, get a diagnosis, figure out the accommodations, and design an IEP. No one would play with him. He was new, big, a little scary, and people thought there was something wrong with him. No one was sure what, but they didn’t want to get too close. It was the contagion theory of disability. “Oops! He has cooties! It’s catching!”

I was a victim of the same contagion theory. My brother also had some undiagnosed disability (later discovered to be on the autism spectrum). The other kids wanted to steer clear of him, and by association, me as well. Not every one, and not all the time. Sometimes people would play with me. Not like the red-headed boy. No one EVER played with him. So I took him under my wing. At recess we’d go over to a big tree, sit in the dirt, and talk. I was really smart, and he wasn’t, at least in the same way, but he thought hard about things and had good questions. I’d answer his questions, and I enjoyed playing teacher. One of the things I showed him was the sorrel growing wild in the grass under the tree, that tasted tart and salty at the same time. At the end of the year, he didn’t pass again, and was held back again, or transferred again. I don’t know. I never saw him after that year. 

One leg shorter

A few years later, my family transferred all of us to a public school because we couldn’t afford the fees. In my new class there was a boy who had one leg that was shorter than the other. He’d had polio when he was little, and almost died, I was told. But he didn’t die, it just messed up his leg. Even so, he was taller than me. Quiet. I mean, REALLY quiet. I don’t remember him ever talking without being ordered to. He wore glasses, had dark hair that he wore almost down to his shoulders (which just wasn’t done then), with long bangs that fell over his face. In those days, we wouldn’t have called him disabled, it was just there were things he couldn’t do. He was that little bit ‘different,’ and boy, did he know it! I wanted to talk to him and get to know him (I thought he was kind of cute), but he didn’t talk to anyone.

Smart as a whip, too bad about the wheelchair

There were two Anderson families in my town that had large families. Mine was one, and there was another one. In middle school, I got to meet one of the kids from the other Anderson family. Ken Anderson was in a wheelchair, I didn’t know why. His disability was big and obvious and he couldn’t hide it. He was smart, social, and people liked him. There was never a shortage of folk who would help push his chair. Ken went on to found a student organization for people with “handicaps” (that was the lingo then) at the University of Iowa. It was called Restrict Us Not (RUN). He had a successful accounting career, and founded his own business. Ken died last winter.

Put the pedal to the metal

In high school, Jeff Benson was a year ahead of me. Jeff had also had polio (I’m old enough to remember getting the vaccine on sugar cubes). For him, it wasn’t just one leg, and not just a little. Both legs were effected. He could have used a wheelchair, but I remember him walking with arm braces. Bright, shiny light hair, gritty and determined, and always the life of the party. He was a live wire! He was a drummer for a popular band, and really belted it out. I remember when he got his first set of wheels. At that age, I didn’t know it was possible for people with wheelchairs to drive. I’m not sure anyone in town had seen a car like this before! His parents had the red hotrod modified to use hand brakes, and I remember him waving to his audience, as he’d roar out of the parking lot with the top down. We lost Jeff just a couple months ago.

Hiding in plain sight

In college, one year, I took Italian. It was a small class. The university didn’t allow classes to be taught unless they had a minimum of six students. We managed to barely scrape by with just the required number to allow us to take the class for the full year. There was one young man who was a senior for the second time. He was in engineering, and they wouldn’t allow him to graduate until he had a full year of a foreign language. He had already flunked out of every other foreign language taught at the school, and this was his last chance to graduate. He struggled, but we all helped him along. Towards the end of the year, the rest of us went off to the side and had a conversation. We had all figured out that he had dyslexia. Did he know? Did he know there are resources to help? Should we talk to him about it? Life could be easier, you know! So we did. We brought it up the last day of class. We mentioned that we knew he had to be absolutely brilliant to have gotten along this far with good grades and no one knowing. He completely panicked. He’d been trying to hide it for his entire school career, and was terrified that we would tell someone and he’d never be able to get a job.

Keeping her safe from romance

After college, I worked at the university library. Someone brought in one of the faculty who was blind to talk about how she used information resources. She was brilliant, obviously, sturdy, and with a huge sense of humor, but life wasn’t built for people with visual impairments, and she had no vision at all. How had she gotten through school and become a faculty member? What struck us the most about her story was when she complained that they had no audiobooks of Harlequin romances. She explained that people with disabilities were considered too fragile to have any interest in sex or romance, and so the organizations that would pay to make audio copies of her academic research information needs would not pay for “smut.” A couple of the gals took matters into their own hands and corralled a group of volunteers. We all took a chapter, and recorded a “smutty” romance novel for her.

Closing Thoughts

I could go on. There are many more stories. As the time of the ADA came closer, I have more and more stories of people wanting to learn more and understand about the barriers. After the ADA was signed, I have stories of some incredibly bone-headed things people did in the name of “accommodation.” When I moved here to Ann Arbor, I was initially shocked by the lack of accessibility for the library I was to manage, and how difficult it was to find people on campus aware of web accessibility. We got an elevator for my library, and then we got a campus web accessibility working group. 

First Meeting of the University of Michigan Web Accessibility Interest Group
1pm on Tuesday August 7, 2007, in a meeting room in the School of Public Health.

There is still a lot to do, but we keep trying. Meanwhile, over the years, many if my friends and family have been diagnosed with temporary, chronic, or permanent health issues ofone  sort or another. Disability advocacy started out for me as something I wanted to do for others, because I love to help people. Now it is personal. As I age, it becomes more and more personal. Without the ADA, I probably wouldn’t even have a job. I wouldn’t have been able to get past a few major health hurdles in the past few decades. Because of the protection of the law, I was able to get accommodations and keep working. I hope that what I do will continue to be useful for years to come. 


RESOURCES AND LINKS

ADA Anniversary Toolkit: http://adaanniversary.org/
Proclamation (Organizations & Government Entities)
Pledge for Individuals
Faith Communities
Resources
ADA Information: http://www.adainformation.org/
Quizbook
ADA Legacy Project: http://www.adalegacy.com/ada25
ADA National Network (Great Plains ADA Center): https://adata.org/ada-anniversary
Timeline of the American with Disabilities Act
National ADA Systematic Review
ADA 25 Celebrate: https://www.youtube.com/channel/UCbUCwPT82s4WnKwnc-vEQyw
Disability.gov ADA25 Social Media Toolkit: https://www.disability.gov/newsroom/ada-25-social-media-toolkit/
Smithsonian: EveryBody: An Artifact History of Disability in America: https://everybody.si.edu/
Access to resources often comes through technology
Communication, Transportation, Medicine, War

Hashtags:
#ADA
#ADA25
#DgovADA25

THEN


Senator Harkin Delivers Floor Speech in American Sign Language Upon Passage of the ADA: https://www.youtube.com/watch?v=BomPo6fPOOo

ADA History Playlist: https://www.youtube.com/playlist?list=PLhUAlIEq4gbqCK_3_ls2K2Rtiq6hPumHa

NOW

The ADA at 25: Promise, Progress, Opportunity U.S. Senate Bill Sponsor Hon. Tom Harkin https://www.youtube.com/watch?v=yToAav3qqBU

National Center on Health, Physical Activity and Disability (NCHPAD): Real People, Real Stories: Celebrating 25 Years of the ADA https://www.youtube.com/playlist?list=PLwMObYmlSHaNT-gke7PoQqkc_k22dYqN5


What has changed since the ADA was passed 25 years ago? https://www.youtube.com/watch?v=mW4hB2hcPBM

http://hr.umich.edu/webaccess/
http://chronicle.com/blogs/profhacker/how-to-evaluate-your-web-pages-for-accessibility/60485?cid=wc&utm_source=wc&utm_medium=en

Emerging Tech, Healthcare & Comics for World Book Day #WorldBookDay

Bedroom Books, Unread, Part 1

One book, two books,
Red books, blue books,
Fat books, thin books,
Old books, new books.
This one has a gold leaf spine,
This one sings a little rhyme.
I could read books all the time!
(a Dr. Seuss parody by yours truly)

Let’s just say I sometimes WISH I could read books all the time. And a great deal of my house looks like the photo. For today, World Book Day, I want to just mention a few (a VERY few) books I’ve been reading lately which may be of interest to readers of this blog.

First off, some that connect directly to healthcare social media, emerging technologies, accessibility, disability, and health literacy — some of my favorite topics!


Digital Humanitarians
Digital Humanitarians, by Patrick Meier: http://www.digital-humanitarians.com/

I love the #SMEM community and #SMEMchat. SMEM stands for Social Media Emergency Management. Think of it as how we use social media for disaster and crisis response. I’ve touched on these topics here before, and will again. When I saw that a book had come out specifically on this, I was delighted. And it had even more — the roles of open data, open source software and tools, citizen science, and crowdsourcing. So HUGELY exciting. I couldn’t wait for the library to get a copy, I had to borrow it interlibrary loan. Then I listened to the webinar with Patrick, hosted by NNLM. Then I didn’t want to give back the copy I’d borrowed, so I had to buy a copy. And then I made SURE the library bought a copy. Well worth reading, in case you haven’t guessed.


Digital Outcasts
Digital Outcasts: Moving Technology Forward Without Leaving People Behind, by Kel Smith: http://digital-outcasts.com/

I’ve been raving about Kel Smith’s book, Digital Outcasts. Kel does a brilliant job of not just look backwards at the intersection of disability, accessibility, and technology, but looking forward. He forecasts new technologies arising and some of the new ways in which they will create barriers to access for people. This one the library has, and they have it electronically.


Conquering Concussion
Conquering Concussion: Healing TBI Symptoms With Neurofeedback and Without Drugs, by Mary Lee Esty & C. M. Shifflett: http://conqueringconcussion.net/

Another one I bought for my own collection is Conquering Concussion, which got a rave review from Kirkus and then was listed as one of the top indie published books of 2014. Let’s just say that I have had enough concussions of my own for this to be personally relevant. Then it turned out that the authors are friends of a friend. Small world. Good book.


The Guide to the Future of Medicine: Technology AND The Human Touch
The Guide to the Future of Medicine: Technology AND The Human Touch, by Bertalan Mesko: http://themedicalfuturist.com/

Berci and I have known each other through social media since he was a med student. And now he’s NOT a medical student anymore, is a world recognized expert on emerging technologies and social media use in healthcare, a highly sought after public speaker, and he writes books. This one I bought as an e-book, because I wanted to highlight like crazy, and be able to download all my highlights in a nice tidy lump (something made much easier by reading the book on a Kindle!).


Last but not least, I’m brainstorming how we might make a webcomic about health literacy skills. Sounds like a really boring topic, eh? But the books I’m reading to do research on the idea are anything but boring.

Wrinkle in Time, Graphic Novel
A Wrinkle in Time, a Graphic Novel, by Madeleine L’Engle and Hope Larson: http://www.hopelarson.com/portfolio-item/a-wrinkle-intime/

This one isn’t remotely medical. Instead, it’s a book I’ve read over and over throughout my life, for which I own multiple editions in various formats, and Hope Larson went and turned it into a graphic novel (ie. comic book). You would not believe how much trouble I’ve had wrapping my head around how to tell a story in a comic. It’s not like I don’t read comics. It’s more like, well, brain freeze. This book got me over the first hurdle. Because I know the book so well in other forms, I could more easily understand how the story changed and stayed the same as it morphed into a more visual format.

On Purpose
On Purpose, by Vic Strecher: http://www.dungbeetle.org/

I’ve known Vic Strecher professionally for many years, probably almost as long as I’ve been working here at the University of Michigan. When I heard that Vic’s daughter had died it was like a punch in the gut, even though I’d never met her. I couldn’t imagine. I’m a mom, and there is no more terrifying thought than that something like this might happen to one of my kids. When Vic wrote a comic book about his experience, and how this became, for him, an opportunity for personal growth, I had to get a copy. And this book is what helped me see how a personal story can become a universal story. Seeing how this transformed into a comic book / graphic novel helped me to see opportunities in my own life for stories that could possibly be transformed into comics.

Oh Joy, Sex Toy (review)
Comic Reviews: Oh Joy, Sex Toy (by PF Anderson) http://www.graphicmedicine.org/comic-reviews/oh-joy-sex-toy-2/

Last month I was asked to review a copy of Erika Moen’s new nicer-than-average comic book on sex toys and sex education. You know. Oh Joy, Sex Toy? Trust me, most of the college age folk already know about it.

Erika Moen
Erika Moen

You can read my review for the basics about the book (which is printed with nice ink on absolutely gorgeous paper, if you’re into that sort of thing). For me, the most exciting part of the book was in the appendix, where Erika did a funny little comic about one day in her life, sketching one panel for each hour. LIGHTBULB! Now, I can see how all the pieces fit together: comic formatting, personal experience, and story telling. Next, I’m hoping to find time to actually make one. I’m nervous. Wish me luck! And inspiration!

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.