Well if nothing else, this year I will [probably] at least do a monthly blog update to tell you about what I’ve been reading. Whether or not this is actually interesting is a whole other story, but whatever, it is my blog. 

This month brought the theme of more things that are terrible or at least suck mildly, but make very interesting books. 

I finished off 12 books this month—down 3 from last month if we are quantifying this, but there are also no short fiction books on this list like there were last month, such as the 27 minute read that was Steal Like an Artist, and 3 less days in the month. 

Here’s what I read in February 2019:

  • Without You There Is No Us: My Time with the Sons of North Korea’s Elite – Suki Kim. I’d understood the culture of North Korea to be restrictive, I didn’t know what that “looked like”. American/South Korean journalist Suki Kim goes undercover as an English-teaching missionary in a boys school in North Korea (Yes. Journalist undercover as a missionary under cover as an English teacher), the resulting book is extremely interesting.
  • Bringing Columbia Home: The Untold Story of a Lost Space Shuttle and Her Crew – Michael D. Leinbach. I remember watching news coverage mixed with the Saturday morning cartoons. It is one of those things, like 9/11, that burned into my pre-teen mind at age 12. I was not aware of the intense search for debris, for remains, the painstaking efforts to return the pieces found in Texas to Florida to “reconstruct” what happened, written by then Shuttle Launch Director, recovery team leader, and Columbia Reconstruction Team leader, Michael D. Leinbach.
  • Prisoner: My 544 Days in an Iranian Prison—Solitary confinement, a sham trial, high-stakes diplomacy, and the extraordinary efforts it took to get me out – Jason Rezaian. After listening to this episode of Pod Save the World, I quickly dove in to Rezaian’s account of what happened after he and his wife were imprisoned by Iranian authorities. (If you read this book, the podcast is likely a great pre- or post-listen, as it includes former Obama Deputy National Security Advisor for Strategic Communications, Ben Rhodes, who worked among the team to free Rezaian, adding a whole other layer). This book does a good job of also capturing the attempts made by the Washington Post and US authorities, that from the inside of Evin Prison, Rezaian knew nothing about.
  • Playing Dead: Mock Trauma and Folk Drama in Staged High School Drunk Driving Tragedies – Montana Miller. I actually downloaded this one by accident from Bookshare but decided to read it anyways. As someone who participated in a “Day of the Dead” in high school, the possibly Canadian version of “Every 15 Minutes”, I was curious about any effectiveness/deterrence research surrounding these staged events. I was also shocked by the huge dramatization and special effects involved in these “performances” at US schools investigated in this book. By the way, it was a tough slog, and I gave it 2/5.
  • Playing Dead: A Journey Through the World of Death Fraud. The book I was actually intending to download also could have been more interesting than it actually was. The author really rambled on a lot about her own fantasies of just disappearing, but instead of disappearing she writes a book about what happens to people who choose to disappear.
  • Then They Came for Me: A Family’s Story of Love, Captivity and Survival – Maziar Bahari. Another book of a captured Canadian-Iranian journalist at Evin Prison in Iran. This book, turned into the movie Rosewater, focuses much on the interrogations Bahari underwent, and his family’s pursuit to free him. Contrasting this with Rezaian’s book was also interesting. 
  • Parkland: Birth of a Movement – Dave Cullen. Author of COLUMBINE, Dave Cullen’s tactic in this book shifts from what happened during the Parkland school shooting and discovering the motives of the shooters (as he did in Columbine) to a focus on the uprising of students to protect any more kids from dying or suffering as a result of lax firearms laws. He spends weeks, months with the kids who started #NeverAgainMSD—and those who felt in left in the shadows—and crafts a comprehensive story. Reading this on February 12, just days before the one year anniversary of the Parkland shootings, I was repeatedly shocked by just how recently this all unfolded.
  • Parkland Speaks: Survivors from Marjory Stoneman Douglas Share Their Stories – Sarah Lerner (Ed.) An often heart-wrenching collection of writings, stories, and poems from MSD students processing the tragic shootings at MSD. (As usual, I constantly wanted “more” information and of course, this is not the book nor format for that.) 
  • Poison Candy: The Murderous Madam: Inside Dalia Dippolito’s Plot to Kill – Elizabeth Parker & Mark Ebner. Dalia Dippolito hires a hitman to kill her husband—the day of his “death” she arrives home to police, police cars, and police tape, and is taken to the police station… To find her friend reported her intentions to police and her hired hitman was, in fact, an undercover police officer.
    My Goodreads review says it best: “I think this book COULD have been really good but it was written in a way that was so boring. I heard about this case from the Court Junkie podcast [which I’d gotten into days before], and wanted to learn more but beyond some random tidbits, the time invested in a 40ish minute podcast was much more worthwhile.” (Here’s the podcast.)
  • Maid: Hard Work, Low Pay, and a Mother’s Will to Survive – Stephanie Land. Recently, my friend Ryan wrote an article for CNN about this book’s author. It provides an “insider’s” perspective at a position nobody wants to be in: homelessness, transitional housing, and working minimum wage jobs to survive. This book is an eyeopener into the “working poor”, and why it can be so hard to get out of the trenches, when the government support that allows you to pull yourself up is stripped back as soon as you hit a barely survivable income level.
  • The Year of Living Biblically: One Man’s Quest to Follow the Bible as Literally as Possible – A.J. Jacobs. An agnostic dude who writes memoirs about things he does for a living writes down all the “rules” from the bible and tries to follow them as literally as possible for a full year. While a bit “long” at times, I was constantly captivated by the logistics of this pursuit—from goodreads “which, let’s be honest, a book like this could definitely be boring, which it was certainly not.”

26/115 — 23% of the way to my goal in 16% of the year. Hopefully I continue to crush this one ;). 

What are you reading?

I’ve written before about the massive impact that services like Bookshare and the Centre for Equitable Library Access (CELA) have had on my ability to enjoy reading longer or more complex books given my learning issues. I think what happened before is that my visual processing/comprehension abilities got outpaced by the books I wanted to read, thus leaving what I was truly able to tackle limited. Fortunately, switching to consuming books mainly by audio has truly changed things for me. At the rate I’m going, I’m going to crush my reading goal of 115 books this year, having read 15 in January alone! Except, two of them were sort-of “cheaters” because they were really short reads I’d acquired from Bookshare near the end of 2018 for “just in case” purposes. But I mean, a book is a book!

Here’s what I read in January 2019. (And yes, I’m still on occasion typing 2018!)

  • The Girl with the Broken Heart – Lurlene McDaniel Far less sappy than the title sounds, this is actually about a girl with a heart problem. But also about love because that is what Lurlene McDaniel does, basically. Teen/YA.
  • Steal Like an Artist: 10 Things Nobody Told You About Being Creative – Austin Kleon. Super short, I think this took 45 minutes to read. Probably one I should read on a regular basis until I commit it to memory. Also, I just read the first two lines of this review by a dude named Peter and I think he’s spot on.
  • The Deepest Secret – Carla Buckley. This one had enough twists I just wanted to keep going. And then [semi-spoiler] it just sort of ended. I have so many questions but I don’t know if I have enough questions for a sequel, if that makes sense.
  • Dancing with Dementia: My Story of Living Positively with Dementia – Christine Bryden. Like any memoir of this nature, it was captivating but also representative of many best-case scenarios.  Super interesting, however, and captures a form of (non-Alzheimer) dementia not as readily understood by most.
  • Meant to Be: The True Story of a Son Who Discovers He is His Mother’s Biggest Secret – Walter Anderson. You know when people discover they’re adopted after doing an online DNA test or whatever? This book was like that except without the DNA test.
  • A Life that Matters: The Legacy of Terri Schiavo — A Lesson for Us All – Mary Schindler. At the end of 2018, I read “the other book” about Terri Schiavo by Mark Fuhrman, “Silent Witness”. In 2005 when the most urgent parts of this case were unfolding, I was in Orlando—at 13 years old, I didn’t understand but the urgency of Terri’s story always stuck with me. This book was written by her mother, and I’d still be interested in reading an account by her husband Michael Schiavo, from the “other side”. I ranked both this and Silent Witness 3/5, though I experienced a much greater cognitive dissonance with the inability to “let go” in Schindler’s book given Terri was not truly Terri anymore. (I tried not to let my opposing political views play into my rating, but it was hard.)
  • Killer on the Road: Violence and the American Interstate – Ginger Strand. After the construction of the US Interstate Highway System, murder rates began to shoot up across America. I started this December 30 but finished it on January 7 with quite the break in the middle—I think the styling initially made it difficult but I got through the last 35% really quickly so maybe it was just me.
  • Unhinged: An Insider’s Account of the Trump White House – Omarosa Manigault Newman. Yes, I finally read the Omarosa book. I still don’t think I know my thoughts on it.
  • Between a Rock and a Hard Place – Aron Ralston. This is one of those books where you know how it ends but you have to still find out how it happens. This is the one where an experienced outdoorsman gets his arm caught beneath a boulder and has to decide how to free himself, ultimately cutting off his own arm and somehow living to write a book about it.
  • Al Franken, Giant of the Senate – Al Franken. Despite that Al Franken is no longer a Senator, I decided to read this memoir. It was quite funny at times but also was sort of trying too hard, though I think that goes with the “award-winning comedian who decided to run for office and then discovered why award-winning comedians tend not to do that” territory. 
  • Tragedy in the Commons: Former Members of Parliament Speak Out About Canada’s Failing Democracy – Alison Loat, Michael MacMillan. I’m not sure I agree with the title, but I did find this an interesting read (with some familiar names). The best part of this, to me, was learning more about the dynamics in the House of Commons. (I’ve since started reading “Procedure in the Canadian House of Commons” which is not quite as dry as one might think).
  • Raven Rock: The Story of the U.S. Government’s Secret Plan to Safe Itself — While the Rest of us Die – Garrett M. Graff. This book was fascinating in a terrifying sort of way, describing the secret underground facilities for saving the lives of government employees and the inner workings of an alternate government should a nuclear bomb hit Cold War America. (Also, I learned there are/were similar secret underground bunkers here in Canada, too.) 
  • Private: Bradley Manning, WikiLeaks, and the Biggest Exposure of Official Secrets in American History – Denver Nicks. In 2010 in a sociology class we had a massive discussion about WikiLeaks that continued throughout the 6-month term following the Collateral Murder video release. Since then, like many, I’ve been captivated by the whole WikiLeaks story. (However, while this was published in 2012, before Chelsea Manning’s transition, I spent the whole book “correcting” these things in my head, though I realize contextually this would have been challenging.)
  • The Most Dangerous Man in the World: The Explosive True Story of Julian Assange and the Lies Cover-ups and Conspiracies He Exposed – Andrew Fowler. Continuing on the WikiLeaks train, this book was far less memorable than the one focused on Manning. It was honestly a bit boring, sadly.
  • You’re Welcome, Universe – Whitney Gardner. I was really pleased with this book’s ability to capture disability while making the character actually, you know, have other character traits than being d/Deaf. Julia is kicked out of the School for the Deaf for graffiti to help her friend, and must find her way in a mainstream school—this book has a lot of nuanced plot aspects without being too unrealistic. I actually gave it 5/5. Teen/YA.

15 down, 100 to go. 
What are you reading? 

This thing is cool.

http://i0.wp.com/farm5.staticflickr.com/4486/36830015114_c7fe8e7a24.jpg?resize=500%2C375&ssl=1

Awhile back, I learned of the C-Pen Reader from the Learning Disabilities Association of Manitoba. After learning more about it, I felt like the C-Pen would be a tool that would help me as a person with a learning disability who learns best through listening rather than seeing—as I’ve written before, I primarily now read audiobooks, and frequently use text-to-speech or VoiceOver on my MacBook, iPhone and iPad when reading longer texts. This switch has greatly enhanced my retention of what I read. But what about actual paper documents? It becomes a hassle to scan dozens of pages to have them convert. 

Enter the C-Pen.

In video, because it probably makes more sense that way. 

Disclosure: I contacted Scanning Pens in the UK requesting to review the C-Pen Reader. They got back in touch quickly sent me one out via a Canadian distributor. I am in no way obligated to provide a favourable review.

You can find “reading with my ears: part one” here.

IMG_1981

Reading with VoiceDream reader on my iPhone – a PDF or electronic text document is read in fairly life-like synthesized voices. Also shown, my Bose noise cancelling earphones.

 

Unlike many people with learning disabilities, I have always enjoyed reading. However, enjoyed is probably somewhat of a loose term. I read constantly, but remembered very little of what I actually read. (Bonus: buy books once, reread them a bunch because you don’t remember what happened). This all started to make more sense when, in 2013, I was diagnosed with a learning disability affecting my processing and memory of information acquired visually, and my processing speed, among other things. In the few years since gaining this information I’ve found a lot of resources that have helped me in ways I hadn’t realized were actually a struggle for me. Now I almost exclusively read audiobooks, retaining far more information with my ears (and allowing me to keep my hands busy at the same time).

Fortunately, audiobook or eText access goes beyond costly audiobooks at Chapters and Audible subscriptions (look, I’d rarely spend $14.95 on a print book a month!), and there are more options out there if you are a person with a disability. To this day, I’ve not touched an audiobook on CD, although I’ve experienced some technology oddities I now avoid (looking at you, Direct-to-Player app of last year!)

Upon learning of my newfound love of audiobooks, my friend Stephen told me about CELA–the Centre for Equitable Library Access, also/formerly known as the CNIB Library.

CELA membership is available to Canadians with a library card to a participating library, who also have a print disability. My learning disability, as well as visual impairment or physical disabilities that prevent people from reading print books, are classified as print disabilities under Canadian copyright law, which also allows people to access works in an alternate format. Signing up for CELA was easy, as it was based on self-disclosure. Other services sometime require proof of disability from a doctor, psychologist, teacher, or other “authority”, as in the case with the National Network for Equitable Library Service (NNELS – Canada) or Bookshare (Canada/US). (I’ve got forms for both stacked up beside me for my yearly appointment with the psychiatrist later this week!) Each of these services provides electronic books either as a recorded mp3 or that can be read by the right technology, such as a screen reader or app. 

 

CELA opened a whole new world for me in reading, in tandem with the audiobooks available through my public library. As well, assistive technology, such as Voice Dream Reader and iOS speak screen (a recent find compatible with kindle eBooks!), has helped me rediscover reading, and allowing me to access longer or more complicated texts without just being completely lost. Now, I don’t just read books–I enjoy them. I remember more of what I’ve read. I can recommend books to people because I remember things about them. It’s exciting. 

 

And because of audiobooks, because of CELA, because of assistive technology?

I hit my 2017 GoodReads reading goal of 52 books before August 9, 2017.

With 144 days to spare.

 

After failing my 25 or 30 book reading goals in years past, that feels pretty awesome. Because even if it works better for me to read in a different way… I’m still reading.

I’ve been on this huge audiobook kick the last week. As in, since December 12, I have read 8 books. (This is what happens when I finish my work early/do not have enough work to do. Honestly, this is fun but I’d rather be writing.) Maybe I’m just trying to hit my 40 book goal for 2016—I am at 26. The answer seems like yeah, right.

Through the Centre for Equitable Library Access program (CELA), Canadians with print disabilities can access a variety of audio or braille books on loan, for free. Most of these books are recorded by the CNIB (Canadian National Institute for the Blind), and as such, Canadian authors are well-featured, and I’ve actually been able to find a book on goalball in the collection. Following Margaret Trudeau’s Changing My Mind, I read Invisible: My Journey Through Vision and Hearing Loss by Ruth Silver.

On attending a conference about promoting independence for those who are both hard of hearing and visually impaired (Deafblind or deaf-blind), she writes:

There was only one speaker who was deaf-blind.
—Ruth Silver in Invisible: My Journey Through Vision and Hearing Loss 

Immediately, I rewound. I listened again, and shook my head.
Typical.

I do not know for certain what year Ruth Silver attended this event in question, of which she wrote “There was only one speaker who was deaf-blind,” prior to starting the Centre for Deaf-Blind Persons in Milwaukee in 1983. She published the memoir in 2012. In any event, that is twenty nine years prior to the book’s publication, and thirty three years ago as of 2016.

I do know that not much has changed.

In mid-November, I had the opportunity to attend an event in Toronto, one that had patients in the title no less. While matters were not “solved”, in response to Twitter-vocalization regarding true patient inclusion by Bill and I, the organizer reached out to us via e-mail following the event to “address” our concerns. The crux of the matter is, even an event that was meant for patients, did not feature a single patient speaking on the matter at hand. While you can scroll back in my Twitter feed or contact me directly to learn more, I’m not going to give nods to the event itself. One, because as much as this event frustrated me, I want to believe they had good intentions even if they were way off the mark, and two, because I believe that these nonprofits are likely doing their patient communities good: it is not up to me to speak on the actual work of these groups. (Disclosure: They paid my travel and expenses, they being pharma, I presume).

So here it is again. There was not one single patient on the agenda. I don’t want to hear any of that bogus “we are all patients” crud (nor that taxpayer BS)—yes at some time we are all patients. However, there are those of us who are chronic patients, reliant on medicine to stay healthy and/or alive.

How sad is it that as this uprising, somewhat-bright, restless collective of humans craving better, how is it we have not gotten this straight in thirty three years?

I wish I knew. Documents like the excellent Patients Included Charter for Conferences get us closer. But they need to be implemented, advocated for in themselves. And we need Canadian patients to be in on, in for this movement, too.

It’s been 33 years. And we’re only starting to figure this out. The uprising is bottom-up, not top-down. I mean, or the reverse, depending on how you view who is in power.

so must we demonstrate
that we can get it straight?
we painted a picture
now we’re drowning in the paint
let’s figure out what the fuck it’s about
before the picture we painted
chews us up and spits us out 

sick of painting in black and white
my pen is dry, now i’m uptight
so sick of limiting myself to fit your definition.

redefine.

—redefine, incubus

We are well overdue to break the typical.
Probably, well overdue by well over 33 years.