Category Archives: Health, Healthcare, Support, Science

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

Bedroom Books, Unread, Part 1

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

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

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


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

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


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

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


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

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


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

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


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

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

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

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

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

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

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

Erika Moen
Erika Moen

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

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/

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

Personalized Medicine, Biosensors, Mobile Medical Apps, and More

At the Quantified Self Meetup, someone was praising the Rock Health slides. Of course, I had to go explore and see what was so great. These are my favorites.

About FDA’s Guidance for Mobile Medical Apps

FDA 101: A guide to the FDA for digital health entrepreneurs by @Rock_Health: http://www.slideshare.net/RockHealth/fda-101-a-guide-to-the-fda-for-digital-health-entrepreneurs

I especially took note of slide 10, where they describe things I would think of as an app, but which do not qualify as such for FDA regulation. This is an important distinction I hadn’t previously considered. Slide 12 takes it further by describing the categories of regulation as based on risk to patients, with good clear examples. Slie 21 on “pro tips” would have really benefitted companies like 23andMe (even though that isn’t actually a mobile medical app, the pro tips still apply, and in spades).

Biosensing Wearable Tech

The Future of Biosensing Wearables by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-biosensing-wearables-by-rockhealth

This one definitely gets into topics relevant to the quantified self movement and self-tracking. Slide six emphasizes the shift from the low hanging fruit (fitness, pulse, sleep) to the long tail — more targeted solutions for specific challenges (hydration, glucose, salinity, skin conductance, posture, oxygenation, heart rhythm, respiration, eyetracking, brain activity, etc.). That’s really quite interesting, and it gives examples of companies working in each space.

Slides 19-24 get into several of the areas our own local meetup defined as challenges to success for companies working in this space and for the future success of the entire area — it has to work, easily, and dependably. Slides 27-30 extrapolate these challenges into the transition into healthcare environments.

Personalized Medicine

The Future of Personalized Health Care: Predictive Analytics by @Rock_Health http://www.slideshare.net/RockHealth/the-future-of-personalized-health-care-predictive-analytics-press Video https://www.youtube.com/watch?v=UJak41hIDWc

SLIDES

VIDEO

It’s probably safe to say that most individuals working in the quantified self / self-tracking space eventually end up struggling with the issue of how to use their data to anticipate avoidable problems. This idea can be translated into the jargon phrase of “predictive analytics.” Slide 11 does a nice job of lining this up with how traditional healthcare is practiced, which is very useful. Slide 12 places this in the context of big data resources, databases, and tools, listing several of the main players. This context is essential for making personal data relevant beyond the drawn out process of n=1 studies. Slide 14 identifies the BIG problem of how companies working in this space largely focus on hospitals and health care providers, and seem to have entirely missed the idea that patients are deeply and actively engaged in this space. And, frankly, there are more of us than them (even if our pockets aren’t as deep). I love the phrase on slide 18, “Symptom calculators are the “recommendation engines” of health care.” Most of the rest of the deck identifies challenges and opportunities, which I hope any entrepreneurial types would examine closely. Do notice that there is a video with this one. You can hear the entire webinar as well as reviewing the slides.

Big Beautiful Questions (A HOTW post from #hcldr)

Guy with questions 8

The other blog for which I was writing the “Hashtag of the Week (HOTW)” posts has changed focus, so I am no longer doing them weekly, but I am still doing them when available time and something amazing both intersect. The something amazing part happens ALL THE TIME, and if that was the only factor, I could do these daily! But this time, the conversation was so relevant and useful that I would feel like I wasn’t doing my job if I didn’t share it.

Yesterday evening, the Healthcare Leadership group had a conversation about the role of questions and questioning in healthcare. The conversation was lead by Bernadette Keefe, MD, and was triggered by Warren Berger’s work in the area of “beautiful questions.” He wrote a book, but you can find a short intro to the core ideas in his New Year’s article, “Forget Resolutions.” To help people ask better questions, more answerable questions, questions that have a higher potential for leading to positive change in their life, Bernadette pointed out the tips from the “Right Question Institute“, and I pointed out the “Question Prompts List” strategy.

Right Question Institute Question Prompt Lists

The real value of the #hcldr conversation, however, came from the questions. The questions posed for the group, and the questions posted as answers. My favorite of the questions posed was, “What are we not asking?” Keep that in mind as you read the following selections from the questions given as answers to the prompts.


T1 In our sizable efforts to make healthcare more efficient, accurate and safe,as well as less costly, what are the questions weʼre not asking?


T2 As you experience healthcare delivery today – is questioning valued?


T3 What are questions you, personally, would like to ask of your healthcare provider, medical insurance company, or hospital?


T4 How could the value of questioning be incorporated into healthcare delivery in an efficient and effective way? Programs etc?


Closing Thoughts

Systematic Reviews 101

Systematic!!!

This morning in the Emergent Research Series, my colleagues Whitney Townsend and Mark MacEachern presented to a mix of mostly faculty and other librarians about how medical librarians use the systematic review methodology. They did a brilliant job! Very nicely structured, great sources and examples, excellent Q&A session afterwards. They had planned for some activities, but it ended up there wasn’t time. I’d like to know more about what they had planned!

I was one of the folk livetweeting. According to my Twitter metrics, this was a popular topic. I assembled a Storify from the Tweets and related content. I thought it would be of interest to people here.

Storify: PF Anderson: Systematic Reviews 101: https://storify.com/pfanderson/systematic-reviews-101

At the Movies: Male Rape, 10 (or so) Heartbreaking #BreakTheSilence Videos (TRIGGER WARNING)

Male Rape Word Clouds

A couple months ago I posted about Mike Tyson’s revelation of having been sexually assaulted as a very young boy, and some related information about male rape and how little is said about it. I didn’t want that to be a one-off, something that is brought up once and then dropped. Social media is becoming a huge tool in creating conversations and safe spaces around difficult topics that have traditionally been avoided. This is one of the most powerful ways in which social media is being applied to changing the world we live in, and it is amazing to observe this ‘unmentionable’ topic (male rape) unfolding through social and popular media.

Several recent events have brought the topic back to mind, rapes, and male rape, and other things we don’t talk about. One was the recent Rolling Stone article about a gang rape at the University of Virginia, and the backlash against it, with implications that the story was improperly researched. Another was the earlier protests on my own campus, here at the University of Michigan, which resulted in official responses from campus leadership.

The UMich protests were at least partly in support of Emma Sulcowicz, the Mattress Performance, and the #CarryThatWeight campaign inspired by the Mattress Performance.

And then, there is the story that broke recently on Twitter, of male artist Shia LeBeouf being raped in his gallery during an interactive audience participation performance art piece. This was confirmed by collaborators at the show, and has opened even more conversations about what it means for a man to be raped.

A couple weeks ago I stumbled onto some information about a new public health initiative in the United Kingdom trying to bring awareness to this topic. They are using the hashtag #BreakTheSilence, a tag which is used by many advocacy groups, so it is a little confusing, however well intended it might be. The UK government is using so many different social media platforms to get out this message — Facebook, Twitter, Youtube, Flickr, Instagram, Pinterest, Tumblr, and more. I could conjecture why the UK is being more open about male rape than the USA, but that’s irrelevant for this post. The fact is that they are. There is the government initiative, active support groups, multiple television shows that have had episodes on the topic, with the recent inclusion of a male rape plot theme and storyline in the daily soap Hollyoaks, which extended throughout an entire season of the show.

In the United States, male rape is still not talked about except rarely and in sensational ways. Even then, it is pretty uncomfortable and the stories tend to die down quickly in the media. Research studies show, however, that this is far from uncommon, and that the repression of the stories and lack of available ways to talk about make recovery far more difficult for male victims of rape.

We concluded that federal surveys detect a high prevalence of sexual victimization among men—in many circumstances similar to the prevalence found among women. We identified factors that perpetuate misperceptions about men’s sexual victimization: reliance on traditional gender stereotypes, outdated and inconsistent definitions, and methodological sampling biases that exclude inmates. We recommend changes that move beyond regressive gender assumptions, which can harm both women and men. Lara Stemple and Ilan H. Meyer. The Sexual Victimization of Men in America: New Data Challenge Old Assumptions. American Journal of Public Health: June 2014, 104(6):e19-e26. doi: 10.2105/AJPH.2014.301946

But the same conversation needs to happen for men. By portraying sexual violence against men as aberrant, we prevent justice and compound the shame. And the conversation about men doesn’t need to shut down the one about women. “Compassion,” [Stemple] says, “is not a finite resource.” Rosin, Hannah. When Men Are Raped. Slate April 29, 2014.

So, this is a tough topic, even if it needs to be talked about in public. We’re going to ease into this gently, slowly. I’ll give you a bit of info about each video, and you decide if you can watch it. Give them a try, though, and try to understand.


(1) #BreaktheSilence around male rape

This is the introductory video to the UK government’s Breath the Silence initiative on male rape. The video unfolds through interviews with an actor who portrays a male rape survivor and someone who represents one of the UK support organizations for male rape survivors. It is fairly light on triggers, and intended to get the conversation going.


“Evidence suggests that 12% of all rape victims are men. Yet we know it is common for men not to come forward or to take years to report being a victim because they fear not being believed, feel alone and worry people will blame them for what’s happened.”

The same video is also available from Survivors Manchester.


(2) Hollyoaks

In the BreakTheSilence video, the actor was from the UK-based television show Hollyoaks. Hollyoaks spent over a year in research, preparing to integrate homophobic bullying and male rape into the show’s storyline. They collaborated with male rape survivor advocacy organizations in planning and writing the script, and the actors worked with them to try to make the story believable. While male rape has appeared in popular media before, it was usually included primarily for shock value and to emphasize brutality. This is the first time I’m aware of that presented the topic as a realistic real-world event, something that happens (even if off camera), and which also shows the recovery, support system, and works through the healing process. In this video, it is an interview with the actors, interspersed with a view extremely brief snippets from the show’s footage, closing with the importance of the conversation being taken up by fans in social media as part of making this something that can be talked about.

A couple other relatively mild videos with excerpts related to the Hollyoaks rape story. (If you want the full episode, dig around in Youtube, and you’ll probably find it, depending on what country you live in.)

Finn O’Connor/John Paul McQueen | Rape Reveal: https://www.youtube.com/watch?v=4Zt6SrSNRl4
Hollyoaks Ste Works Out Finn Raped John Paul: https://www.youtube.com/watch?v=KsaK5MATfrw
Hollyoaks – {John Paul’s traumatic ordeal tribute} https://www.youtube.com/watch?v=gxjlUKrwDj0


(3) The Bill: “Mickey’s Side Of The Story” (Subject of Male Rape)

Presented as a music video, snippets are included from Episode 153 of another UK show, The Bill, themed around police stories. In this episode, a man suffers flashbacks to childhood sexual abuse from a coach.


(4) Why Rape Is Sincerely Hilarious

Whoa, whoa, take a minute and calm down. Yes, the title sounds inflammatory and insensitive. It isn’t. This video opens to a black screen and a young man, saying, “Hi, my name is Will, and I sincerely think that rape is hilarious.” He seems happy, quirky, smiling, laughing. The screen never changes, and the young man stays on screen straight through the very short video. The video closes with the same young man, still smiling, still laughing, but flushed, red, clenching his jaw as he forces himself to keep smiling, and with tears in his eyes, saying, “And that’s why I sincerely think that rape is hilarious. Because I have to.” His story is worth listening to.


(5) The Shia Labeouf Thing and Male Rape

This is a sweet video. A cute young woman in a darling dress and with excellent makeup was filmed sitting by her Christmas tree. It’s all rather lovely. But what she says is what’s important. She talks through a script with research and statistics. She puts the whole script in the video comments with live links to the excellent resources she identified (which is the real reason I selected her video). She correctly calls out people who are trying to shame Shia LeBeouf as setting a bad example for other victims of male rape. It’s not the world’s best video, but she’s right.


(6) No Escape: Prison Rape in America – The Rules of the Game: Prison Rape and Reform

Prison rape is a serious issue, and often overlooked in statistics and studies of male rape. This video tells the sad story of an innocent sent to prison for a minor crime, being raped, terrified, victimized, and then using his own experience to try to change the system to protect others. I love the comment towards the end to the effect that until you can guarantee safety and the opportunity to improve self-esteem, it is really hard to change people for the better.


(7) Male Rape

An educational video from the Service Assisting Male Survivors of Sexual Assault (Australia). This video is relatively non-triggering, as an audio interview of a woman, Rachel, from a support organization for men who’ve been raped by other men. The discussion includes how to tell if your son may have been raped, how pedophiles groom entire families to gain access to one child, that adult men can be rape victims, the role of sexual violence against men as an act of war, adult recovery from childhood victimization, and much more. Highly informational, almost no images.


(8) Heath’s Story of Surviving Military Sexual Assault

Recent years have seen a dramatic increase in the incidence and reporting of what is becoming known as military rape, mostly against women. It does happen to men, also, although people have sometimes trouble believing it. Protect Our Defenders is an organization that has as its mission to help deal with the issue of military rape. This video allows a Navy veteran to tell the story of his victimization and bullying, and how he ended up accepting a dishonorable discharge to escape.


(9) Shatterboy: Men Surviving Sexual Abuse

“The odd thing about it, though, is children are made aware of rape, male on female rape, all of their lives. They never hear about female or male on male.”

Intended as a resource for therapy groups, this video includes conversations with five male survivors of sexual abuse. It illustrates some of the range of what can happen, the vulnerabilities of men and boys. It talks more coherently about the longterm psychological impacts these events can have on a person.


(10) The Congo

In the war and violence going on in the Congo, rape has become a common tactic to control and demoralize people, to keep them from fighting back. The statistics reported in this video state that approximately 40% of all women and 24% of all men have suffered sexual trauma and/or violence. The stories coming from this area are exceptionally brutal. In the highlighted video, there is a brief interview with a survivor and a longer interview with a doctor about the need for support and treatment for male victims of sexual violence.

Congo’s male rape victims speak out https://www.youtube.com/watch?v=OGz3VkcLgkk