Author Archives: pfanderson

Choosing a Tablet Computer for the Elderly & Technophobic

Grandpa

From the “Drafts Pile” post, some folk commented and others emailed, but this was the most requested topic, which made it top of my list for writing the next blog post.

INTRODUCTION

It wasn’t that long ago that we were picking out a tablet for my dad. Back in the day, my dad was a hard core computer geek — programmer, hacker, build-your-own. My childhood was chockfull of tickertape and punchcards and Tandy home computer kits being assembled in the basement. My dad was anything but technophobic, but even for him the new world of the Web was confusing. I remember when he and I were talking on the phone, and he was having a small rant about how he and his tech cronies at the local college had spent hours trying to figure out how to download an image from a web page. They were SO frustrated (this was about 10 years ago). I said, “What?! Right click didn’t work?” and he replied, “Right click? What are you talking about?” I suddenly realized that I had outstripped my father in the realm of technology. I think it was quite a shock for both of us.

When I heard that my dad was still trying to get by using a >10 year old Windows machine, flatbed scanner, and a 2400 baud modem, my heart ached. We kids talked it over and went together to get him and iPad. Why an iPad? Mostly because that’s what other folk in the family had already, and there was built in family assistance for him if he needed help. Not to mention, I could also add the charge for his Internet access to my account, and he never needed to worry about it. But that was us, and that was a few years back.

I cannot imagine how much MORE frustrating and intimidating it must be for people who were never strong with “The Force” when it comes to computers. In my family now, I am the tech wizard and my (ahem, adult) children are the ones who come to me with questions about how to do things. And I go to my geek-squad friends and sister when I get stuck with mobile tech. And someday, I will be like my dad, uncertain in the face of tech that has evolved so quickly it has outstripped my ability to keep up. What are the options now for you and your loved ones?

BACKGROUND

Being a senior doesn’t mean you are technophobic, being a technophobe doesn’t mean you are a senior, and you can still have challenges with technology without falling into either group. In addition to the elderly, there are others, such as children or persons with certain disabilities, who benefit from making tech simpler to use, more self-explanatory, and more durable. Ultimately, making computers easier to use benefits EVERYONE, just like curbcuts for wheelchairs help bicyclists and parent pushing strollers. That’s how accessibility works. What’s important is to not assume that “they can’t do it”, or it can’t be done. Everyday we make progress making computers better, stronger, faster, smarter, and, yes, EASIER. So, while this post focuses on the motivating idea of elderly folk who are struggling with computers, don’t limit your ideas of who might be helped to just those groups.

Seniors and Technology

The Pew Internet Research Center has been tracking how seniors use and work with the Internet since 2001, when only 15% were online (my early adopter dad being one). Now, 14 years later, it’s roughly 60%, and even within those seniors who use the Internet, there is a lot of variation in how well they are able to use it.

“Two different groups of older Americans emerge. The first group (which leans toward younger, more highly educated, or more affluent seniors) has relatively substantial technology assets, and also has a positive view toward the benefits of online platforms. The other (which tends to be older and less affluent, often with significant challenges with health or disability) is largely disconnected from the world of digital tools and services, both physically and psychologically.” Pew. “Older Adults and Technology Use,” 2014.

These two groups aren’t necessarily stable, either. People shift between them. Fifteen years ago, my dad fell into the first group of tech-savvy elders. By the time of his passing, earlier this month, he had shifted largely into the second category, but still wanted to check his email. For others, it might be that a new treatment, supportive living situation, or even a techy gift might actually bring someone MORE into the realm of using the technologies around them. While I was traveling home from my Dad’s funeral, an older woman stopped me in the waiting room at Union Station. Her 82-year-old boyfriend (her words) had given her an iPhone, and her girlfriend was texting her, but she didn’t know how to read or answer the texts. Our conversation ended with, ” … and when it turns green, that means it’s been sent? Oh, thank you!”

Technophobia

Technophobia is a far more important concern than simply one’s age. The fear of the technology can be isolating, keeping people apart from loved ones and friends when this is how they communicate and connect. This is such a problem, that people are actually building tech solutions to address such very specific issues such as sharing baby pictures on Facebook, and how do you include family members who are not ON Facebook? [Check out Kidpost, if you have this challenge in your family.] AARP recommended the Presto Printing Mailbox for seniors without a computer, allowing friends, relatives, and caregivers to send anything from family photos to medication reminders. AARP went on to fund a major white paper on the topic, Connected Living for Social Aging: Designing Technology for All (2011).

The phrase “digital isolation” has been adopted to describe this as a significant social issue within society, with titles like “Digital Isolation Plagues Those Who Need Internet Most” and “What Will Become of Britain’s Digitally Isolated After Martha Lane Fox’s Resignation?” Digital isolation is blamed as a contributing factor to poor outcomes in disaster response and health (especially in diabetes). The origins of technophobia may or may not lie in the technology itself, but the impacts are surely heavily social in nature.

“… rarely, if ever, is technophobia based just on the happenstance of technical ignorance. It almost always has its roots in … a sense of estrangement from the world into which one is cast. Here common sense cannot help, for it is from the prevaling common sense that one is estranged. To the technophobe, the technological world seems alien; to common sense, the technophobe seems foolish.” Burch, Robert. Confronting Technophobia: A Topology. Phenomenology + Pedagogy 1986 4(2):3-21. https://ejournals.library.ualberta.ca/index.php/pandp/article/download/15013/11834

Solutions to technophobia need incorporate that social aspect of the presumed problem. Sarah Maurer recommends that technophobes can get past the fear by starting slowly, taking a class, try a touch screen, get the same types of devices your relatives are using, and ask your kids and grandkids to help you learn your way around.

Maurer, Sarah. 10 Tips to Beat Technophobia: Seniors can conquer their fears and start enjoying online technology. WCCTA WebsiteCompass Spring 2012.

The National Legal Aid and Defender Association recommended in 2004 that you start out by playing Solitaire, using cheatsheets, and don’t make the mistake of asking a true geek for help (because they may not be the best communicators). They also recommended “reverse mentoring,” where you learn something and then teach it to someone else who knows even less. These are still good idea, although some folk might prefer to replace Solitaire with Candy Crush or Trivia Crack or one of the other hot new games.

NLADA. Overcoming Technophobia

More

If you are interested in tracking this area, I have two recommendations. One is Senior Tech Insider, a truly marvelous news tracking service from Karen Heyman which shares news and alerts about telemedicine, accessibility, policy and regulatory issues, and emerging technologies that touch on the lives of the elderly. The other is a counter to the argument I hear so often of, “I’m too old to try.” Me, I’m only approaching 60, so perhaps I’m not a persuasive case. So check out John F. McMullen, who is older than me. I’m not sure how much, but I know he was around for many of the tech events that shaped my youth, and he was tied right into them, knows the folk involved, and still writes about them and how the issues have progressed over time. He’s everywhere online (blogs, BlogTalkRadio, Facebook, Flickr, Google Plus, LinkedIn, OpenSalon, Podbean, Twitter, Youtube, …). He is enormously more engaged in multimedia production than I am. And he still writes and talks about technology. Never say it can’t be done. Heck, did you hear the one about the 114 year old woman who couldn’t register for Facebook because their age verification form didn’t go that far? It’s true.

TECH OPTIONS

So, even with recognizing there are some pretty significant social aspects to working with a loved one to help them get online, and assuming that they don’t have a philosophical opposition to the very concept and are willing to try, what happens next? Where do you go, what factors are most important in your decision, what are the choices? Do you go with a ASUS VivoTab, RealPad, In-Touch, iPad, Kindle Fire, or … what?

COMPARISONS & SELECTION CRITERIA

Checklist

COSTS
– Device Price
– Network Access (is included, or is extra?)
– Monthly fees?
– Carrying case or protection (optional)
– External keyboard (optional)
– Security or registration (optional)
– Training or courses (optional)
– Tech support (included or optional extra?)
HARDWARE OPTIONS
– Display (resolution, crispness, color, screen size, enlargement, zoom, etc.)
– Buttons (size, visibility, clarity of purposes)
– Keyboard (built-in, optional add on, external, on-screen, in-case, …)
– Battery life
– Wall or plug-in charger
– Weight
– Memory card slot (optional)
SPECIAL & PERSONAL FACTORS
– Tech Support available, what kind, does it match person’s preferences?
– Interface & appearance
– Accessibility & font enlargement
– Background Skills
– Special health concerns that may impact on how device is used
– Apps available for personal interests
– Apps available for hobbies & games
– Apps available for special health needs or tracking

More resources

For Dummies: For Seniors: Buying the Right Tablet: http://www.dummies.com/how-to/content/for-seniors-buying-the-right-tablet.html

My Ageing Parent: Computers or tablets for older people? http://www.myageingparent.com/computers-or-tablets-which-are-better-for-older-people/

My Ageing Parent: Are there better tablets for elderly than iPad? http://www.myageingparent.com/better-tablet-ipad-elderly/

New York Public Library: Tablet Buying Guide: A Primer for Technophobes, Luddites and the Just Plain Confused (2013) http://www.nypl.org/blog/2013/12/20/tablet-buying-guide

Senior Planet: The Best Tablets for Technophobes (2014) http://seniorplanet.org/the-best-tablets-for-technophobes/

TechRiggs: Best Tablets for Seniors and Elderly Senior Citizens (2015) http://www.techriggs.com/best-tablets-for-seniors-and-elderly-senior-citizens/

HARDWARE OPTIONS

These are currently the best known and available tablet computers which were either designed explicitly for seniors or which are being promoted as useful for that demographic. Several of these were designed in collaboration with seniors, such as the AARP RealPad and the Senior Touchpad. Some of these have been around a while and have a lot of pre-existing support resources, like the iPad, Chromebook, and Kindle. Others are brand new, like the GrandPad, just announced in February 2015.

MORE:

Best Tablets for Seniors and Elderly Senior Citizens http://www.techriggs.com/best-tablets-for-seniors-and-elderly-senior-citizens/

Don’t waste your money on AARP’s RealPad http://www.modern-senior.com/dont-waste-money-aarps-realpad/

Great deals on tablets for seniors: http://www.modern-senior.com/great-deals-tablets-seniors/

In My “Drafts” Pile

M-BLEM Workshop at UMich

This winter has been a rough one for my family. Lots of family crises, illness, injury, etcetera. What that means is that the blog slows down, projects slow down, I get way (WAY) behind on things I wanted to do and wanted to share. In the past month, my collection of unfinished (“draft”) blog posts has exploded. What normally happens then, is that I actually finish a couple that someone asked for, whatever else is most fresh in my mind, and the rest never happen. I thought it was about time to give folk a chance to comment on what they want, so that I do write up things people have asked about. Also, several of these were planned to be brief expansions of Storifys or Slideshare decks that I made or found and wanted to share, so for those, I’ll just put links in for now, and will expand on them later, maybe, if you ask.

#a2wiad – Ann Arbor’s Stake in World Information Architecture Day

Anonymous Social Media Overview, Part Four: More on Risks, Opportunities, Benefits, Ethics

Biobanks & Biobanking

Comics & Healthcare

Cool Toys U: September 2014 Notes

Cool Toys U: October 2014 Notes

Designing a Tablet Computer for the Elderly & Technophobic

Design plus Business [NOTE: There is a LOT more I need to add into this story! Cool stuff!]

#HCSMCA on “Is Academic Peer Review a Dead Man Walking?”

Infographic of the Week: Public Attitudes to Science 2014

“Live Long & Prosper”: Can Emotional Intelligence Be Taught? #HCLDR [NOTE: Linked is Joyce’s Storify on this, but I wanted to do one with a different focus]

MBLEM Workshop

MEDLIBS on the Horizon Report 2015

My Physical Therapy & My Tech

Peer-to-Peer Sex Education in Social Media & Games

Phoebe Gloeckner

Random Round-up: Cool Things Tech is Doing with Poop

Report Out: The Happiness, Health, and Stories of Populations (#umcscs)

Selecting Online Resources for MOOCs

Sexpertise 2015

Should She? Or Shouldn’t She? Sharing YOUR Pics

Strategies for Better Science Blogging, Part 2

Symposium: Thirty Years of “Thinking Sex”

Hashtags of the World (HOTW): #WhatIfResearchKit / What If Research Kit … ?

Apple ResearchKit
Apple ResearchKit: https://www.apple.com/researchkit/
ResearchKit for Developers: https://developer.apple.com/researchkit/

Last week, while I was deep in the throes of a family crisis, Apple announced “ResearchKit.” I noticed it, but obviously had no time to do anything with it. I’m looking forward to exploring that. I mean, really, it’s getting a ton of press!

9to5Mac: ResearchKit did in 24 hours what would normally take 50 medical centers a year – Stanford University

Bloomberg Business: Thousands Have Already Signed Up for Apple’s ResearchKit

CNBC: Apple’s ResearchKit: Gamechanger for digital health care?

Forbes: Apple’s Open-Source ‘ResearchKit’ And The Future Of Medical Research

MacWorld: First medical apps built with Apple’s ResearchKit won’t share data for commercial gain

MacWorld: Stanford’s ResearchKit app gained more users in 24 hours than most medical studies find in a year

TechCrunch: ResearchKit An “Enormous Opportunity” For Science, Says Breast Cancer Charity

TedBlog: mPowering the Apple ResearchKit: How Max Little put a Parkinson’s app on the iPhone

TheVerge: Apple’s new ResearchKit: ‘Ethics quagmire’ or medical research aid?

TheVerge: Apple’s new ResearchKit lets iPhone users participate in clinical trials; It could help researchers recruit from more diverse populations

Wired: Apple’s ResearchKit is a New Way to do Medical Research

Here is what Apple and it’s current group of partners are envisioning for how ResearchKit might be used. It sounds pretty inspiring already, with a nod to some of the complicated ethical and privacy issues poised to emerge.


ResearchKit – how iPhone is transforming medical research https://www.youtube.com/watch?v=VyY2qPb6c0c

In the meantime, several of my friends and colleagues on Twitter have begun discussion their visions for what could be done with ResearchKit. This group includes patients as well as researchers, and this, I suspect is the demographic, the community creating collaborations where the most profound and productive changes will be found. Here’s what they are saying, so far. Why don’t you join in?

Why stop there? What other possibilities could come from widespread adoption and use of ResearchKit?

#WhatIfResearchKit helped monitor the progression of Alzheimer’s Disease. Like a more official version of what was seen in ‘Still Alice’?

#WhatIfResearchKit helped improve treatment and intervention for depression through passive activity tracking?

#WhatIfResearchKit apps were developed in collaboration with the patient community? If these apps aren’t used, there’s no data to analyze.

What if Apple released a tool so anyone could make a #ResearchKit connected app. True citizen science. #WhatIfResearchKit

What if a community of translator helped translate #ResearchKit studies and consent information into other languages. #WhatIfResearchKit

#WhatIfResearchKit was rolled into the #PrecisionMedicine initiative and the NIH took a more open-source mentality to data collection.

That #WhatIfResearchKit already exists recalls @rufuspollock: “The best thing to do with your #data will be thought of by someone else.”

#WhatIfResearchKit tracked child development so that children with autism could be diagnosed quicker and provided with skills

Catching up on two rich threads: #bcsm + #WhatifResearchKit Who says we can’t cry and laugh and hope and rage all at the same time?

#WhatIfResearchKit was a cross-platform non-profit initiative partnering together device manufacturers to better healthcare? #DigitalHealth

“The key to understanding #health & disease is research & data.” Check out @AppIeOfflciaI’s #WhatIfResearchKit: http://apple.co/1FFSLR8

#WhatIfResearchKit JMIR will built a Healthbook app which randomizes participants to #mhealth apps #megatrial with 700 million participants

Healthbook http://www.healthbook.com/ will use #researchkit and also support n-of-1 trials to evaluate #mhealth apps #WhatIfResearchKit

What if all the people who are “healthy” (for now) could contribute their data as controls? #WhatIfResearchKit

#WhatIfResearchKit had an opt-in for every human, to proxy any slice of my data to #opensource science. +audit-trail

#WhatIfResearchKit was my life baseline, always collecting data when I’m healthy, so when I’m sick, the record is computable + comparable.

#WhatIfResearchKit was available on android platforms to ensure more socioeconomic, racial and ethnic diversity of participants

#WhatIfResearchKit flipped the paradigm community based studies studying access to care, how tertiary care centers impact POC communities

What if Apple made a dashboard so that we could all see enrollment numbers for #ResearchKit apps (in real time)? #WhatIfResearchKit

Reporters: If you are writing about #ResearchKit check out the ideas being shared here: #WhatIfResearchKit (and interview those innovators)

#WhatIfResearchKit – A story in 140 character bursts of hope https://storify.com/iamspartacus/whatifresearchkit … via @iam_spartacus

Hashtags of the World: The #SciArt Tweet Storm

Sonobe Ball as Gift for IV

Since I’m no longer doing hashtag posts weekly, I’m revising the acronym to “Hashtags of the World” hoping to imply basically that they are interesting. They will be interesting to me, anyway! The image at the head of this post is my most popular contribution to the #SciArt Tweet storm (a.k.a. Twitterstorm).

Help Us Start a SciArt Tweet Storm: http://blogs.scientificamerican.com/symbiartic/2015/03/01/sciart-tweet-storm/

#SciArt obviously stands for Science plus Art, and this week the tag is focused on creating international attention for science through the engaging lens of art and artists. Symbiartic, the group that is hosting this, has an excellent high-profile blog, hosted through Scientific American. They have a large following, a good core team, and have built strong relationships with a broad range of collaborators. All of that has come together for a phenomenal event and a trending hashtag. The stream for the hashtag is phenomenal. Here are a few of my favorites from the life sciences subset of the conversation.

MORE:

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.

Tactile Graphics, An Introduction

Book Cover, Texture, Quackery All Bricked Up and Nowhere to Go ... Nailed Texture
Texture: Drain Cover Washington, DC: Donkeys: Black & Braille Rough
Montebello: Pottery Texture Woven Sculpture #4 Univ of Mich Binding Imprint

This week I attended a webinar on tactile graphics. Most people I know would say, “Tactile graphics? What does that mean?” So let’s start with that.

In a way, we’ve always had tactile graphics, in the broad sense of pieces designed for visual impact which carry tactile interest or information. Leatherworking often has designs punched into the leather; quipu knotwork carried mathematical data; old books had logos embossed into the covers; pottery might have painted ornaments layered onto the surface which can be felt and distinguished; sculptural shapes might be designed with textures that add layers of insight to the underlying meaning of the work; fabrics can have textures woven into them.

And of course, there’s always Braille, in which embossed or raised dots carry very specific kinds of meaning — words and numbers. In the center of the opening montage is an image of a sculpture of a donkey covered with Braille letters and words. This was a political statue in Washington DC. I don’t know what it says, but I imagine someone with blindness caressing the glossy blackness and curved shapes of the statue, reading the words of the Declaration of Independence, or the statements of the Bill of Rights. Such a powerful metaphor for the idea of tactile graphics. But in another sense, this explanation is a kind of digression, for in the actual world of artists creating art to be touched, the phrase they use is not “tactile graphics” but “tactile art” or “sensational art,” meaning art for senses beyond simply vision and art explicitly designed to be touched. If you are interested in this aspect of tactile artistry and graphics, you might want to be aware of the work of Ann Cunningham, who is a leader in this space.

Ann not only creates artwork that carries dual meaning through combined visual and tactile designs, but is also engaged in how this can carry over to shaping information and making “sensational books.” If you have ever tried to read a plain text (ASCII) version of a heavily illustrated book, in which the images have been redacted since they are not text, you may have some insight into the challenges of reading books while blind. You can read the text, but whenever you reach a place where an image is referenced, you read whatever description was given in the text, but that is usually minimal and refers to the image itself for further insight, and the image is not there. As a sighted person, I often go the the Internet Archive and download both the ASCII version of the book (for speed and portability) and a PDF version (which includes the graphics). I’ll read the ASCII text, and when I become sufficiently frustrated, I will open the PDF online version to see what image they are talking about.

Here is an example of what I mean, a work about Vincent Van Gogh. In the first screenshot, if you are sighted, you will see the title page and opening etching, entitled “Le Semeur.” The image shows a young man in peasant garb, grasping a large bag with his left hand, and making a gesture with his open palmed right hand. Even if you don’t read French, you may be able to guess at the meaning of “Le Semeur,” which is “The Sower.” In the second screenshot, if you are sighted, you will see the same area of the book in the raw text format. Where the image should be, there is nothing but a string of cryptic meaningless computer code, followed by the words, “LE SEMEUR.” There is no indication that you are even missing an image, no clue given as to what content it is that you are missing. Later on in the book, there will be a table listing images in the text, and that may give you a clue, but until you get to that point, you are pretty much lost.

Screenshots illustrating how images "translate" to text in OCR.
Screenshots illustrating how images "translate" to text in OCR.
Van Gogh, par Théodore Duret. Full: https://archive.org/details/vangoghvincent00dureuoft Text only:
https://archive.org/stream/vangoghvincent00dureuoft/vangoghvincent00dureuoft_djvu.txt

So, very broadly then, tactile graphics are graphics which carry meaning through elements that can be touched. More narrowly, the phrase “tactile graphics” has become meaningful as an explicit technique in the creation of accessible information for persons with visual impairment. This is actually closely related to the work being done by Ann Cunningham, since the technologies used function in a similar way, often creating a kind of bas-relief version of an image so that it can be perceived and interpreted by persons who are blind. It is also work that is closely related, conceptually, to Braille, in that it explicitly tries to convert information into a format that can be deciphered by persons with blindness, in this case, visual information.

This can be done with making lines on paper that will puff up so people can feel them. This can be done with special paper, special printers, or special pens. This works fine when the images are linear, but less effective when they are more complex. It can also be done through the techniques mentioned earlier, embossing, embedding, interweaving, etcetera. There are kits, special hardware, a whole variety of technologies being developed around ways to make tactile graphics. All of those approaches tend to be very time-consuming. New technologies being used to create accessible tactile graphics include 3D printing, in which image characteristics are converted to a three-dimensional form and literally converted into a kind of flattened sculptural form of the image. There are some concerns that all the hype around 3D printing will lead to people focusing on that as the ONLY kind of tactile graphic option, which is far from the case, or that people will mistake the conversion of images to 3d format for actually making the images accessible, which may or may not be the case. A particularly eloquent description of this dilemma was posted to Facebook by a teacher of young children with special needs, Yue-Ting Siu.

3D printing and Misappropriation for Tactile Graphics https://www.facebook.com/notes/yue-ting-siu/3d-printing-and-misappropriation-for-tactile-graphics/333500170166311

This was in response to a long conversation around this topic, one for which the entire conversation is well worth digging into.

That’s a very brief introduction into the concept of tactile graphics. I’ll include a few more links at the end if you want to explore more. The webinar from the Diagram Center was very interesting. The webinar, presented by Richard Ladner of the University of Washington, included a solid background in how tactile graphics for accessibility are being created now, some of the technologies, challenges, and solutions. Some of the problems are the time needed to create the tactile graphics, the low resolution of the information, the loss of complexity in the information content, and that certain types of information don’t translate well into current tactile graphic modalities. Then Dr. Ladner described the special problems associated with complex mathematical images and equations, especially those in advance mathematics, physics, and engineering texts. Without access to those images and that content, persons with blindness can be, in essence, excluded from those professions no matter what their actual talents might be. His team has been working on some new approaches to the idea of tactile graphics, creating images that can be read with a smartphone. Wow. Now, this is still fairly early in the development life cycle, but the potential for this new approach is phenomenal.

The Storify (below) includes my notes and links from livetweeting the webinar. The webinar itself, Tactile Graphics with a Voice, will soon be posted on the DIAGRAM site.

Storify: Tactile Graphics With a Voice: https://storify.com/pfanderson/tactile-graphics-with-a-voice


MORE INFORMATION

Tactile Graphics: http://www.tactilegraphics.org/
– Producing Tactile Graphics: http://www.tactilegraphics.org/computerassistedtactiles.html

3D Tactile Graphics: http://3dtactilegraphics.com/

American Foundation for the Blind:
– Basic Principles for Preparing Tactile Graphics http://www.afb.org/info/programs-and-services/professional-development/teachers/tactile-graphics/1235
– Braille Writing Tools and Tools for Tactile Graphics http://www.afb.org/info/living-with-vision-loss/using-technology/reading-and-writing/braille-writing-tools-and-tools-for-tactile-graphics/1235
– Deciding Whether to Create a Tactile Graphic http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/electronic-files-and-research-work-group/deciding-whether-to-create-a-tactile-graphic/12345
– Resources for Preparing Quality Tactile Graphics http://www.afb.org/info/resources-for-preparing-quality-tactile-graphics/5
– Tactile Graphics Course: http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/interested-in-becoming-a-braille-transcriber/tactile-graphics-3016/12345
– Types and Producers of Tactile Graphics http://www.afb.org/info/programs-and-services/professional-development/solutions-forum/training-and-other-needs-work-group/types-and-producers-of-tactile-graphics/12345

American Printing House for the Blind:
– Tactile Graphics Image Library: http://www.aph.org/tgil/
– Tactile Graphics & Manipulatives Available from APH (Missouri School for the Blind: Outreach Services) http://msb.dese.mo.gov/outreach-services/documents/Tactile-Graphics-Products.pdf

UPDATE: MORE RESOURCES FROM THE DIAGRAM CENTER

The DIAGRAM Center: http://diagramcenter.org/
– The Accessible Image Sample Book: http://diagramcenter.org/standards-and-practices/accessible-image-sample-book.html
– Poet Image Description Tool: http://diagramcenter.org/development/poet.html
– Research Reports from DIAGRAM: http://diagramcenter.org/research.html
– Tools from DIAGRAM: http://diagramcenter.org/development.html
– Webinars: http://diagramcenter.org/webinars.html

Liveblog: #Sexpertise15 at U of M, Keynote

Well. I was going to livetweet the opening lecture for the 7th annual Sexpertise at the University of Michigan (#sexpertise15), but Twitter decided I am a bad bot and not allowed to tweet about it. :( So instead, I took notes, and will ‘liveblog’, but that’s a lot more work and I’m annoyed with Twitter. Here goes!


6:30 – 7:30 PM: Keynote Event: Undoing a Culture of Violence
Consider the ways we talk and learn about sex – do our words show respect for people? Do media messages condone or judge certain sexual behaviors? How could our communication be shaping what we think is normal – including violence? In this keynote address, Chinyere Neale, Director of Global Health Student Programs at the U-M School of Public Health and AASECT Trained Sexuality Educator, will lead participants in an exploration of the cultural norms that shape our thinking about sex and sexual violence, and will help us imagine a world without sexual assault.”

Up on screen at #sexpertise15 is:


Robin Thicke – Blurred Lines ft. T.I., Pharrell https://www.youtube.com/watch?v=yyDUC1LUXSU
Clean https://www.youtube.com/watch?v=qODrhss9ALc

Chinyere Neale: Academic Network for Sex Education and Research: https://sites.google.com/site/ansermichigan/affiliates/chinyere-neale

“When they asked me to do this, all the news was about rape on college campuses, so I thought maybe something about consent.”
There has been an explosion of violence against women.
I don’t have the answers. What would it take to end the culture of sexual violence against whoever the victims might be.

“Up to 20% of women say their first sexual experience was not wanted.” Common: coercion, arm-twisting, persuasion, name-calling …

Most official reactions [to stemming sexual violence] focus on prosecution. Instead, could we just focus on less violence?

People say let’s have more access to abortion. I want to say let’s need less abortion. Let’s not have women find themselves in that situation.

Problems in the media with MESSAGES that suggest sex is something people can take FROM each other. Look at the Robin Thicke song, “Blurred lines.” The message is “crappy / creepy.” The point isn’t that we shouldn’t listen, but that we should have a conversation about it.

There is nothing new about this. Bing Crosby & Doris Day “Baby, it’s cold outside” was a date rape song. Just listen to it! She says, “What’s in this drink?” Then later, “No, no, no.”


Baby Its Cold Outside – Bing Crosby & Doris Day https://www.youtube.com/watch?v=009kRJKf9rg

Remember Family Matters? Urkel liked this girl. Kept approaching this girl. What did that make him? A stalker, eh? Message: It’s ok to keep pursuing someone who isn’t interested.

Most of the assault we talk about on campus is people who know each other, maybe even like each other, but haven’t AGREED to have sex. Famous people, or non-famous people who drug peoples drinks; people who offer to walk you home, and then insist on a sexual price.

What should we do? (She asks the audience for their ideas.)

AUDIENCE

AUD: Start really young.
AUD: Teach kids. Start with good touch/bad touch, but maybe that’s not good enough. Maybe no touch unless consent
CN: Start with boys. Teach them affection young. GI Joe was designed as a “Barbie” doll equivalent for boys.
AUD: Don’t limit sex ed to physiology, include relationship skills
CN: People think if someone says “no” they don’t really mean it. Not every perpetrator is a bad person. Comparing sex ed in US to Netherlands. Teens start out in the family house, parents know. In Holland, everyone had a condom in their pocket. In the US, “People said, ‘not me!'”


Let’s Talk About Sex https://www.youtube.com/watch?v=UBqKOiBEbSY

CN: Don’t ask me to talk to your family about sex. Talk to your OWN niece!
AUD: Normalize conversations about violence as well as sex.
AUD: Make sexual violence as unthinkable as murder.
CN: Back to the guy who jumps out of the bushes. The rare rapist. They are married. They have kids. They have sex with their wife. When we hear an accusation, we default to “they wouldn’t do that,” because “they’re a nice guy.”
CN: I like this novel: Before and After, by Rosellen Brown > http://www.amazon.com/Before-After-Novel-Rosellen-Brown/dp/0312424418. In it, the son is accused of rape. Almost everyone thinks he’s too nice to have done it. But the mother, the MOTHER, she wonders.
CN: You like to think that you raised your son right, that he wouldn’t be a rapist. I like to think that I raised my son right. I do have some evidence. I walked by my son’s room once, heard him say, “Why are you having sex with that girl? You don’t even LIKE her?” I went “YES!”
CN: You have to listen. You have to listen, when someone says, “Someone did this to me.”
AUD: Media literacy can play important role. Corporate America trying to sell stuff, they use messages that endorse sexual violence.
CN: It’s much more powerful to share things with your children than to just ban it. They then have no way to analyse it, to give a context of critical thinking. For my son, I cut out designer labels. That wasn’t a message we wanted to support. Now, it’s not possible now to avoid designer labels, but you can still have a conversation around it. With your children. With your friends. Give people a chance to think more deeply about our environment.
AUD: There’s an element there of corporate responsibility. They should be held accountable, held to a higher standard.
CN: They think their responsibility is to their stockholders, not humanity, not audiences. You have to vote with your money. Don’t let artists with positive messages starve. It’s harder now, since big corporations own everything.
CN: One more thing: we need to let the definition of masculinity be broadened. Women have a much broaden space in which to express themselves.

At this point, Chinyere closed the audience discussion and returned to her presentation.


Force Majeure Trailer (2014) – Cannes Film Festival HD https://www.youtube.com/watch?v=3nTJIc_e6Ns
Force Majeure is an interesting movie set in Sweden. In it, there is family facing an avalanche. The women grabs the children. The man grabs the cellphone and books, and takes off. Then he tells the story as if he rescued his family. Over and over.
The rest of the film is about how his dishonesty is more of a betrayal of his wife than his actions.

Brene Brown began researching vulnerability in woman. Then a man told her she was missing something important, that men are vulnerable, too.


The Power of Vulnerability https://www.youtube.com/watch?v=iCvmsMzlF7o
Listening to Shame https://www.youtube.com/watch?v=psN1DORYYV0

We have very narrow definitions of masculinity. We need to give men a broader range in which to express themselves socially and emotionally. There are guys in groups of gang rapes who wouldn’t do that, but peer pressure pushes them into it.

It starts from childhood. But you can start with your brothers and friends.

I don’t think the answer to solving sexual violence is one thing. It’s complex.
Women asserting agency will help.
Better communication will help.
All those ideas you had, what you suggested. That will help.
It takes all of that.

I hope all of you will join in that struggle.

We need to provide some degree of equality to women. Not complete equality, we’re not there yet, but SOME degree.
Women are not quite as vulnerable in our society as they are in some others. It’s still a big job.

Here’s my idea of the gold standard for how that conversation ought to go:


Marvin Gaye – I Want You https://www.youtube.com/watch?v=6RRCZ0QjM2k
v=6RRCZ0QjM2k

I want you the right way
I want you
But I want you to want me too
Want you to want me, baby
Just like I want you


UPDATE:
There are two more nights of events, so check them out. Also, I just found the Michigan Daily article of last night’s talk.

Sexpertise keynote talks healthy sexual choice http://www.michigandaily.com/news/sexpertise