Category Archives: Health

Promoting Human Rights Through Science: What do we do, What can we do, and What’s right to do?

Screenshot of title page

Screenshot of the title page of the article. Please go to the article itself for full description.

“Promoting Human Rights Through Science.” That’s the title of a new article, available today from Science Magazine. (Ironically, unaware of this, today I wore my “March for Science” t-shirt to the office as a “casual Friday” thing.)

Promoting human rights through science
Lauren Segal, Ryan Dz-Wei Chow, Brijesh Kumar, Jenny Nguyen, Kun-Hsing Yu, Jennifer Chen, Emre Ozan Polat, Kaitlyn Elizabeth Porter, Michelle Kelly-Irving, Israel Bimpe, Kristy A. Winter, Runxi Zeng, Majid Ahmed, Dustin Ray Saalman, Joshua Isaac James, Michal Kosinski, Easton R. White, Fernanda S. Oda, Hope Bretscher, Perrine Hamel, Swati Negi, Ali Jawaid
Science 06 Oct 2017:
Vol. 358, Issue 6359, pp. 34-37
DOI: 10.1126/science.aaq1083
http://science.sciencemag.org/content/358/6359/34

I know for myself, it has always been important to me to have my work include opportunities for advocacy for others, a chance to make a difference, to better lives. In the Dentistry Library, we worked to support outreach, information, education, research, and clinical work in the last major social healthcare frontier in the USA. In my job as the Emerging Tech Informationist I am able to be part of the conversations around adopting and developing new technologies and keep the questions in mind of how patients and the public are being included, and how technologies create new disabilities even as they create new opportunities. As a researcher, I work to the best of my ability to ensure that my work has the potential to not only inform interesting questions, but to empower others to apply our work and methods in their own environments. I try to publish in open access journals, I try to use open source tools. I try to make my methods crystal clear and replicable. I try to share my data. I try to partner, widely, and sometimes that means compromising and negotiating and educating around issues of intellectual property, access, openness, transparency, and so forth.

In today’s SCIENCE article, these are the human rights they highlighted:

Right to food
Right to health
Right to be remembered
Right to information
Right to education
Right to privacy
Right to a healthy environment
Right to culture

Of course, by far the most populous section was “The Right to Health,” with discussions of communities, cultural context, disparities, vaccines, delayed diagnosis, disasters, social determinants of health, health literacy, and policy loopholes that can be exploited in ways that undermine health rather than promote it. Powerful stuff.

We need to push this out, especially those of us on social media. This is the sort of thing that directly impacts on how the public view science and scientists, and thus has the potential to downstream impact on funding. But that can’t happen unless the public is aware of this, so it’s important to get this out beyond the Academy. It’s important for us to expand upon this, to tell our own stories of why human rights matter to us, why science matters to us. Just as with poets, and pop singers, and athletes, most of us aren’t doing this to get rich, and most of us won’t get rich. Most of us do research because we want to make a difference, we love the science and research and learning new things, and we see exciting opportunities when we place those side by side. How can we help the general public see that in each of us, and in science overall?

More important, can we use articles like this, stories like these to engage with the public in conversations around these topics. Are the rights mentioned here the ones that are actually important to the people around us, and to our society at large? If so, how do we tell those stories so that they see we’re there, too? If not, why not? Is there something people need to know that they don’t? Is there something they know that we don’t? I’m a big fan of the Cochrane Collaboration’s efforts to include patients on the research teams, not only to inform the process and to support “translation” of findings into practice, but perhaps most importantly to shape what questions are asked and studied, to help assure that these are the problems that really matter. Making the stories of science and scientists widely available and engaging with the public around them is the first step in entending that model into all of science. You can help. Share this article, talk about it, challenge it, ask questions, ask for more.

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Comics, Graphic Medicine, and Creating Stigma Awareness: A Panel

Comics, Graphic Medicine, and Creating Stigma Awareness

Last week I mentioned this year’s Investing in Ability events, and that I’m involved with one. Well, this is it! Friday afternoon you can join us to talk about “Comics, Graphic Medicine, and Creating Stigma Awareness.”

The panel includes:

* Susan Brown of the Ypsilanti District Library, who coordinates their Graphic Medicine collection;
* David Carter of the Duderstadt Library, who coordinates the University of Michigan Libraries’ Comics and Graphic Novels collection;
* Anne Drozd of the Ann Arbor District Library on their comics, webcomics, and related collections and activities; AND
* Lloyd Shelton, of the Office of Services for Students with Disabilities.

Each of the librarians will talk about how stigma, stereotypes, and bullying are portrayed in their collections, with Susan focusing on Graphic Medicine, Dave on mainstream comics, and Anne on indie and manga. Lloyd will respond to they stories they highlight from the point of view of a person with disabilities. This promises to be a phenomenal event, and I hope you can join us:

October 16, Friday
Hatcher Library, Gallery (map)
3pm-5pm

The event is in an accessible location, and will be audio-recorded.

Health Professions Education Day & Taubman Library Grand Opening

I just wanted to say how button-busting proud I am of last week’s Health Professions Education Day and the Grand (re)-Opening of our library. There was an enormous amount of content related to both, so I made them into two separate Storify. The #HPEDay collection includes a rich overview of the innovative and collaborative approach to health education across all seven of the University of Michigan schools and colleges (dentistry, kinesiology, medicine, nursing, pharmacy, public health, and social work), with rich visionary insights into professional ethics and leadership. Profound, and worth a slow deep exploration. The Taubman Health Sciences Library re-opening collection includes many images from tours of the new building which was designed to support these visions. Enjoy!

If you have specific questions, feel free to post them below, and perhaps they can trigger additional blogposts that go into more detail about specifics.

[Updated Sept22 to correct list of participating schools & colleges.]

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:

#Katrina
#Katrina10
#Katrina10Years
#SinceKatrina

People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.

STORYTELLING: THEN & NOW | HEALTH & MEDICAL | HISTORY, MUSEUMS, EDUCATION, & LIBRARIES | RESILIENCE, LOSSES, & LESSONS LEARNED | PROGRESS & NEW TOOLS

STORYTELLING: THEN & NOW

HEALTH & MEDICAL

HISTORY, MUSEUMS, EDUCATION, & LIBRARIES

RESILIENCE, LOSSES, & LESSONS LEARNED

PROGRESS & NEW TOOLS

The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

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

* THE BLOGGESS

* EXPECTATIONS

* INTERACTIONS

* JUDGMENTS

* SENSATIONS

* EXPERIENCES

LAST BUT NOT LEAST

At The Movies: Tactile Art & Tech for Autism

David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.

David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”


Tactile Art | MichEpedia | MconneX https://www.youtube.com/watch?v=uQU7ZhMvH2k

University researchers and students create device designed to aid in Autism therapy https://www.michigandaily.com/news/university-researchers-and-students-different-fields-study-create-device-designed-aid-autism-th

More videos about the project from Dr. Ahlquist.

Social Sensory Surfaces Research Project from Sean Ahlquist on Vimeo.

Social Sensory Surfaces Research Project https://vimeo.com/125392278

Stretch|PLAY from Sean Ahlquist on Vimeo.

Stretch|PLAY https://vimeo.com/125633678

Social Sensory Surfaces: http://taubmancollege.umich.edu/research/research-through-making/2015/social-sensory-surfaces

Related work from Dr. Chesney on his work with autism.


Software Engineering Class Hacks Autism https://www.youtube.com/watch?v=CUT-Chcffqc

Digital avatars help children with autism – w/video http://www.autismdailynewscast.com/digital-avatars-help-children-autism/21463/snapshot/

Hacking Autism and University of Michigan https://www.autismspeaks.org/blog/2012/05/01/hacking-autism-and-university-michigan

Video games help autistic students in classrooms http://usatoday30.usatoday.com/news/health/story/2012-05-31/video-games-autism-students/55319452/1

More interesting projects by Dr. Chesney & his students.


Untapped Resonance: David Chesney at TEDxUofM https://www.youtube.com/watch?v=GO9HSiUMylE


Engineering with Grace: https://www.youtube.com/watch?v=aDjYoyYfUQE
Engineering with Grace: Software class aims to help one teen communicate: http://ns.umich.edu/new/multimedia/slideshows/21712-engineering-with-grace-software-class-aims-to-help-one-teen-communicate
Computer Science with Soul: http://dme.engin.umich.edu/grace/


Provost’s Seminar on Teaching – Presenter David Chesney https://www.youtube.com/watch?v=FDSwN1MEfnY

#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.