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

DARPA: Biology IS Technology, Biology is INFORMATION Technology #DARPAbit

150225-N-CJ559-024

This is possibly the coolest (or scariest) thing I’ve seen since I become an Emerging Technologies Librarian. I wanted to blog about it a WEEK ago (which is when I made the Storify, over the weekend because I was so geeked I couldn’t wait). The reason I didn’t blog it then was because our library is moving into our renovated digs TODAY and packing took precedence. Somehow that delay just makes this even more delicious. You MUST see this!

DARPA (Defense Advanced Research Projects Agency) is the branch of the United States government most directly and publicly associated with emerging technologies. You better bet that I pay attention to what they’re doing. I try to peek at the DARPA budget, go every so often and poke around on their site, and keep my antennae tuned for mentions of DARPA in the news. They are in the news basically all the time, so I can’t pay TOO much attention, and since in recent years they have been largely focused on robotics (a.k.a. the famous DARPA Robotics Challenge) and engineering, and I am focused on healthcare emerging tech, maybe I haven’t visited as often as I might if it was just for fun. That has changed, because DARPA is now officially into the idea of biology as technology. Check out their recent conferences on this topic: Biology is Technology!

“DARPA’s Biological Technologies Office (BTO) is bringing together leading-edge technologists, start-ups, industry, and academic researchers to look at how advances in engineering and information sciences can be used to drive biology for technological advantage.”

Oh, my, yes. Now, THIS is right on target for what I want to know about in my job. And I bet there are all kinds of grants coming around and possible partnerships that our faculty will want to explore. Here are just a few of the bits the news media picked up from these conferences: targeted antibody development and THoR (Technologies for Host Resilience); brain-computer interfaces; cortical modems & optogenetics; engineered biology and GMOs more broadly; exoskeletons; memory technologies; open data and open source; prosthetics; terraforming Mars with GMOs (and there was a LOT on this!).

Craig Venter on headless humans and predicting your exact face from your DNA

There are some topics that interested me that the news hasn’t seemed to talk about yet, at least not prominently. Aging and immortality. Biocomplexity and Crohn’s disease. Cancer. Innovative research methodologies. Microbiomics. Transplantation and organ farming. Future of scholarship. Oh, and there is SO much more. It was livestreamed, but I couldn’t free up the time to watch it, so I am trying to work through the videos now. Here, join me.

DARPAtv: Biology Is Technology (San Francisco, February 2015) https://www.youtube.com/playlist?list=PL6wMum5UsYvZnisi5VjUUjhpXoIMTSCwx

Arati Prabhakar – Director, DARPA
Fireside Chat: Sue Siegel CEO GE Ventures
Geoff Ling – Director, BTO: Fomenting Technological Revolution
Phillip Alvelda – Program Manager: Beyond Prosthetics
Dan Wattendorf – Program Manager: Outpacing Infectious Disease
Jack Newman, Amyris
Alicia Jackson – Deputy Director, BTO: Programming the Living World
Fireside Chat: George Church interviewed by George Dyson
Justin Sanchez – Program Manager: Brain-Machine Symbiosis
Matt Hepburn – Program Manager: It’s the Host not the Pathogen
Stephen Friend – Sage Bionetworks
Barry Pallotta- Program Manager: A Wild Ride
Doug Weber – Program Manager: Enabling the Body to Heal Itself
Justin Gallivan – Program Manager: Embracing Biological Complexity
Keynote Craig Venter – Founder and CEO, HLI, JCVI and SGI
Keynote Saul Griffith – Otherlab
Karl Deisseroth, Stanford University
Will Old, University of Colorado at Boulder
Michel Maharbiz, University of California, Berkeley
Eddie Chang, University of California, San Francisco
Adam Abate, University of California, Berkeley
Scott Ulrey: Doing Business With DARPA

DARPAtv: Biology is Technology (New York City) https://www.youtube.com/playlist?list=PL6wMum5UsYva5aoxvLejhB9eirt0TVD-K

Alicia Jackson – Deputy Director, BTO: Programming the Living World
Welcome to DARPA BiT from Dr. Steve Walker, Deputy Director of DARPA
Dr. Geoff Ling: Fomenting Technological Revolution, DARPA BiT
Martine Rothblatt: Keynote at DARPA BiT
Dr. Phillip Alvelda: The Future of Neural Interface, DARPA BiT
Dr. Alicia Jackson: Programming the Living World, DARPA BiT
Jack Newman: Keynote at DARPA BiT
Zach Serber: Keynote at DARPA BiT
Dr. Elizabeth Strychalski: Biocomplexity, DARPA BiT
COL Matt Hepburn: It’s the Host Not the Pathogen, DARPA BiT
Dr. Doug Weber: Neurobiology as Technology, DARPA BiT
Kevin Tracey: Keynote at DARPA BiT
Dr. Justin Sanchez: Brain-Machine Symbiosis, DARPA BiT
MAJ Chris Orlowski: Optimizing Human Performance, DARPA BiT
COL Dan Wattendorf: Rapid Health Protection for the Population, DARPA BiT
Dr. Harvey Lodish: Keynote at DARPA BiT
Dr. Justin Gallivan: Building with Biology, DARPA BiT
Dr. Barry Pallotta: A Wild Ride, DARPA BiT
Dr. Geoff Ling: Day 1 Closing Remarks, DARPA BiT
Dr. Geoff Ling: DARPA BiT Day Two Introduction
Dr. Stephen Friend: Sage Bionetworks – DARPA BiT Keynote Speaker
Dr. Paul Cohen: DARPA Program Manager, DARPA BiT Keynote Speaker
Dr. Joel Dudley: Mount Sinai School of Medicine – DARPA BiT Keynote Speaker
Dr. Peter Sorger: Harvard Medical School – DARPA BiT Keynote Speaker
John Sculley: Former CEO of Apple and Pepsi-Cola – DARPA BiT Keynote Speaker
Scott Ulrey: DARPA Contract Management Office – DARPA BiT
Dr. Geoff Ling: Day 2 Conclusion – DARPA BiT

So much good stuff! I just had to make a Storify to integrate the videos with the pics and tweets.

And I made a big playlist with all of the videos so far, from all the sessions (partly because I started making this playlist before I found theirs, and because I want all of it in one place, easy for me to find).

Patricia Anderson: Playlist: DARPAbit: https://www.youtube.com/playlist?list=PLEEZFNZ4nUEDTdj_dxxYLz9z7kSZH-oP1


REFERENCES (Chronological order)

2015/02

Robbin A. Miranda, William D. Casebeer, Amy M. Hein, Jack W. Judy, Eric P. Krotkov, Tracy L. Laabs, Justin E. Manzo, Kent G. Pankratz, Gill A. Pratt, Justin C. Sanchez, Douglas J. Weber, Tracey L. Wheeler, Geoffrey S.F. Lin. DARPA-funded Efforts in the Development of Novel Brain–Computer Interface Technologies. H+ Magazine February 9, 2015. http://hplusmagazine.com/2015/02/09/darpa-funded-efforts-development-novel-brain-computer-interface-technologies/

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015. http://hplusmagazine.com/2015/02/13/video-friday-darpa-prosthetics-research/

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015. http://hplusmagazine.com/2015/02/15/biology-technology-darpa-back-game-big-vision-h/

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015. http://mic.com/articles/121341/darpa-biotech-7-ways-the-government-wants-to-change-the-human-body-for-the-future

2015/04

Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015. http://hplusmagazine.com/2015/04/28/restoring-active-memory-replay-darpa-seeks-super-learning-and-enhanced-memory-technologies/

Maxx Chatsko. Can DARPA Change Your Mind on Engineered Biology? The Motley Fool interviews DARPA’s Dr. Alicia Jackson from the Biological Technologies Office. The Motley Fool April 30, 2015. http://www.fool.com/investing/general/2015/04/30/can-darpa-change-your-mind-on-engineered-biology.aspx

2015/06

Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015. http://www.nature.com/news/the-pentagon-s-gamble-on-brain-implants-bionic-limbs-and-combat-exoskeletons-1.17726

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015. http://www.slate.com/blogs/future_tense/2015/06/24/darpa_s_biology_is_technology_conference_discusses_problems_with_open_source.html

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015. http://nextbigfuture.com/2015/06/darpa-wants-to-engineer-from-millions.html

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015. http://blogs.discovermagazine.com/d-brief/2015/06/26/darpa-is-engineering-organisms-to-make-mars-livable/

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015. http://reliawire.com/2015/06/darpa-genetically-engineering-organisms-for-terraforming-mars-into-livable-planet/

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015. http://www.business-standard.com/article/pti-stories/darpa-to-terraform-mars-with-human-engineered-organisms-115062800459_1.html

A Tack Board of Tags (HOTW July 19, 2015)

There have been some fantastic conversations on Twitter this week, on a huge diversity of topics and organized around some intriguing hashtags. I was personally involved with the Summit for the Mayo Clinic Center for Social Media (#MCCSM) and the local systematic review training course (UMTHLSysRev). It was a series of happy coincidences that led me to the events Astrobiology Science Conference 2015 (#AbSciCon); Inspirefest 2015, the future of science, technology, engineering, and mathematics with new perspectives on innovation, leadership and success (#inspirefest2015); and International Association for Suicide Prevention (#IASP2015). I was surprised to find two very relevant Twitter chats that were new to me: hereditary cancer chat (#hcchat) and the Internet of Things chat (#IoTchat). Last but far from least, the nursing-inspired #WhyWeDoResearch tag is a very motiving and inspiring meme to explore. I’ll put just a few examples of each below, hoping to intrigue you enough to go look at these yourself.



Mayo Clinic Center for Social Media | #MCCSM (#mccsm archive)



Systematic Reviews Workshop: Opportunities for Librarians |
#umthlsysrev (#umthlsysrev archive)



Astrobiology Science Conference 2015 | #AbSciCon



Inspirefest | #inspirefest2015



28th World Congress of the International Association for Suicide Prevention, Montreal, 2015 | #IASP2015 (#IASP2015 archive)



Hereditary Cancer Chat #HCchat
(#HCchat archive)



#IoTChat: Internet of Things Twittersphere Chats Evolve | #IoTchat



Why We Do Research Campaign (Weebly sites blocked in UM hospitals) [Campaign video 1; campaign video 2] | #WhyWeDoResearch (#WhyWeDoResearch archive)

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.

What Patients Think About Clinical Trials, Take 2 (#bioethx)

At the Doctor's Office: Push For Help

ADDENDUM

Within minutes after the previous post went live, I was contacted on Twitter by another patient advocate, Willow, also known as Serious Skeptic. She* expressed another wide area of patient concerns about clinical trials, ones that were new to me, and which deserve representation in this post, even if they aren’t from the official public #PatientChat event. Because Willow has a locked account, and I respect that, I asked her permission to share the links and the essence of some of her private tweets. The following is posted with her consent, but represents my words and distillation of what I learned from her.

Willow was concerned about ethical breaches in clinical trials, especially:
– trials that are designed specifically to promote use of a drug (marketing);
– trials that suppress undesired findings or which fail to publish or share negative findings;
– trials that don’t share their data;
– trials that don’t make relevant or useful findings available to all trial participants.

I had the impression she’d kind of like the research studies to also notify trial participants of publications that do result from their participation. I know, I do, myself, and being a medical librarian, I take notes on my research participation, the names of studies, the names of the PI, and I stalk their publications for years until I see the research in which I participated. I often ask to be alerted, and usually received some sort of polite demurral, and nothing else. I wish they had an email list I could just subscribe to for alerts from their lab.

Anyway, when Willow described clinical trials that are actually marketing ruses, my reaction was, “Whoa! Not really? Doesn’t the IRB process protect against that?” Evidently not. The concept she was describing most is called seeding trials. Here are some links she shared with me, or quotes and/or resources from those articles.


A physician is invited by a pharmaceutical company to take part in a study involving an FDA-approved drug. The physician’s responsibilities entail prescribing the drug for patients and then completing three questionnaires about each patient’s experience with the drug. The questionnaires are quite short and will take about 20 minutes each to complete. The sponsor will pay $1,500 for each completed questionnaire. The physician is very interested in participating because it looks like a great way to increase practice revenues.

Rusczek JP, Rusczek AM. Fraud and Abuse in Clinical Research: Three Case Studies. ABA Health eSource June 2010 6(10). American Bar Association. http://www.americanbar.org/content/newsletter/publications/aba_health_esource_home/Rusczek.html
– Research Involving Non-Employed Physician Investigators
– Marketing Disguised as Research
– Double Billing

The public has lacked convincing documentary evidence of a long-suspected drug company practice: promoting a new drug by sponsoring a randomized trial in which participating physicians use the drug as they follow the trial protocol. This practice—a seeding trial—is marketing in the guise of science. The apparent purpose is to test a hypothesis. The true purpose is to get physicians in the habit of prescribing a new drug.

Sox HC. Seeding Trials: Just Say “No.” Ann Intern Med. 2008;149(4):279-280. doi:10.7326/0003-4819-149-4-200808190-00012 http://annals.org/article.aspx?articleid=742309

Seeding trials are designed to appear as if they answer a scientific question but primarily fulfill marketing objectives. Kessler and colleagues (3) portrayed seeding trials as “attempts to entice doctors to prescribe a new drug being marketed by the company” while the company puts its product in the hands of practicing physicians, hoping that the experience of treating patients with the study drug and a pleasant, even profitable, interaction with the company will result in more loyal physicians who prescribe the drug (4).

Hill KP, Ross JS, Egilman DS, Krumholz HM. The ADVANTAGE Seeding Trial: A Review of Internal Documents. Ann Intern Med. 2008;149:251-258. https://www.leg.bc.ca/cmt/39thparl/session-4/health/submissions/Hill_The_Advantage_Seeding_Trial_2008.pdf

“Merck’s marketing division handled both the scientific and the marketing data, including collection, analysis, and dissemination; and Merck hid the marketing nature of the trial from participants, physician investigators, and institutional review board members.”

Keim B. Merck Vioxx Study Disguised Marketing as Science. Wired 08.19.08 1:22 PM. http://www.wired.com/2008/08/merck-vioxx-stu/

Merck minimized the true risks of Vioxx (Apr 17, 2008) https://www.youtube.com/watch?v=PQYxZSUDnqI

The maker of Neurontin disguised an effort to promote the anti-seizure drug to physicians as a clinical trial and failed to inform involved physicians and patients, according to a new analysis published Monday in the Archives of Internal Medicine journal.

Girion L. Neurontin study was a sham designed to boost drug sales, researchers say in medical journal. Los Angeles Times June 27, 2011. http://articles.latimes.com/2011/jun/27/news/la-heb-neuronton-seeding-trial-20110627

Seeding trials are an unethical, dangerous way to market a product. The IRB needs to become a better-equipped committee that can identify seeding trial practices from honest clinical trials, and the FDA needs to demand more transparency from companies sponsoring clinical trials, to better protect public health and the integrity of clinical research.

Varga M. Are Seeding Trials Ethical? Kulkarni Law Firm Blog June 11, 2012 11:11. https://www.conformlaw.com/blog/are-seeding-trials-ethical/

Recommended Principles to Guide Academy-Industry Relationships. American Association of University Professors. University of Illinois Press, Jan 25, 2014. See the endnotes on pages 341-2. https://books.google.com/books?id=lFSNAgAAQBAJ&pg=PA341&lpg=PA341&dq=drug+seeding+trials&source=bl&ots=AEZ1Xa7NUS&sig=W_nCm_h2w7Uhtf5tWd4V6sf5ggI&hl=en&sa=X&ved=0CDIQ6AEwAzgeahUKEwjw9JWVyovGAhWjWowKHTvgAJQ#v=onepage&q=drug%20seeding%20trials&f=false


Because of the risks and distrust generated by the practice of seeding trials, Willow suggested that it might be wiser to wait to test new meds on your own body until they’ve been out for a few years, unless you are so ill that you have no alternatives. Now, of course, if everyone does that, then there are NO NEW DRUGS because we can’t test them! And that is a situation in which we all lose.

My own choices? I take risks that I won’t ask others to take. I try to be informed about the risks I take. When I participate in a research study, I ask a lot of questions, and I pay very close attention to my body. If my canary-in-the-mine body complains, I withdraw from the study. Well, I would. So far, I’ve never actually needed to withdraw from a research study, but I have ceased taking actual FDA-approved meds prescribed for me that my body couldn’t handle. I’m hoping that the #bioethx chat group will pick up on this topic next, and hoping they can find an invited speaker to talk about what IRB committees have done and are doing to try to address this, to build confidence in medical research.


* I am assuming Willow is a she because I interpret the name Willow as a female name. I have no knowledge or confirmation of that, and it isn’t any of my business anyway. I am using the female pronoun to describe her simply for convenience, and intend no disrespect.


ADDENDUM TWO, June 13

A few clarifications and corrections from the ever thoughtful Willow.

Willow feels my concern about limiting drug discovery isn’t valid, since seeding trial occur for drugs that are already patented. My concern is that fear of seeding trials will scare some participants off of drug trials entirely. Drug discovery trials are legitimate, but the problem remains that it can be difficult to distinguish discovery trials from seeding trials, since the physicians and patients are both kept in the dark by the drug manufacturers.

What Patients Think about Clinical Trial Engagement (#patientchat)

At the Doctor's Office

I had really wanted to participate in this Twitter chat today (#patientchat), on how patients find clinical trials, decide to engage with them, what resources they use, their expectations, and their concerns. I missed the chat, but it is archived in Symplur, so I was able to scroll through, search, dig, prowl around, and find my favorite bits. Since I went through all of that, I thought I’d share it. I’d recommend reading more deeply in the transcript for anyone in clinical trial research or recruitment, patients with basically any kind of diagnosis (as Mighty Casey eloquently said), people interested in translational medicine (where patients play a crucial role), as well as clinicians. Evidently, patients consider clinical trial recommendation from the primary care clinicians to be an obligation, not an optional part of providing care. Who knew? I bet we could automate relevant clinical trial notifications in EHR and as part of clinic visit prep. Why not? Explore below and see what other surprises and creative nuggets appear.

Introduction to Usability & Accessibility for Medical Librarians

Last week’s Twitter chat for medical librarians (#medlibs) was on topics near and dear to my heart: accessibility and usability. I (a) was impressed by the caliber of the conversation, and (b) wanted to collect the good links and ideas in a place that would make it easy to find for other medical librarians. So, here is a Storify. I particularly recommend the links.