ADHD + learning disabilities / assistive technology / books / politics

speaking out against impending liberal cuts to print disability services

• by kerri

One thing that’s been keeping me a degree of sane during the pandemic is books (by the way, it’s Day 357). As explored in articles Reading With My Ears Part 1 and Part 2, audiobooks are how I get my reading done, because a bunch of years ago I found out I have some variety of learning disability and my ears are how I get reading done.

Well. This week I found out from a contact at the Centre for Equitable Library Access (see disclosure at end of article) that the Liberal government has slated $4 million in cuts to print disability services in a move toward elimination of these services, which is clearly not good. And if you know me, you know I like writing letters to elected officials—okay well like is strong because generally I write letters when not-good things are happening. Today’s was, thankfully, made easier because my Member of Parliament, New Democrat Daniel Blaikie and his team are who I would call “my people”. 

You know, thus why I didn’t start this letter with “Dear Mr. Blaikie” like I used to. After hanging out in the campaign office and knocking doors during the election and nowadays spending some evenings on Zoom, that’d be weird now. (If I haven’t written about it, political things with the New Democratic Party are things I do now. It keeps me sane when my provincial government repeatedly makes choices without a brain and the federal government does things like this and Liberals vote against national pharmacare when they’ve been campaigning on it since I was a toddler.)

Anyways. Read on to hear what’s going on, and feel free to grab any stats from this to write your own MP to speak out against these cuts and encourage them to take action (more here from CBC). 

Hi Daniel and team!

Over three million Canadians live with a print disability. I am one of them. Through our work together, my learning disability has likely never become apparent: I can “read” just fine–until texts get longer or more complex, and then my deficits in visual memory and other things get in the way. I found out I had a learning disability when I was 21, eight years ago, and nearly 3 full years into university.

I’m reaching out regarding the Liberals intended cuts of $4 million to funding services for Canadians with print disabilities, and to share my experiences with these programs as a constituent. A “print disability” includes any disability that interferes with the ability to read printed text, including visual impairment, physical disabilities that impact a person’s ability to turn a page, and learning disabilities including, but not limited to, dyslexia. An estimated 7% of Canadians affected by a print disability, and the Centre for Equitable Library Access (CELA) and National Network for Equitable Library Service (NNELS) are vial services for those who access them, providing books, newspapers, and even magazines to those who need alternate format reading materials. Written works can be delivered through audio, eText, and Braille, in various formats.

I’d always enjoyed reading, but at some point, my ability to comprehend written work was outpaced by the complexity of content I wanted to read, or that I “should have” been able to read. It’s not that I couldn’t read it—my learning disability testing indicated my vocabulary and writing abilities are a relative strength—but that I was held back by visual memory and working memory issues. I can read it, but my brain doesn’t know where to file it or store the information for later. As such, when I read to enjoy something, I reverted to books for teens: I got lost in the plot of more complex books, and was held back by my visual memory and working memory issues. With my learning disability diagnosis came the recommendation to use audiobooks for school–it helped, but I didn’t know there were options outside of academics. A friend who is blind told me about CELA, formerly CNIB Library, many years ago now. I explored the website, found I was eligible, and submitted an application.

In Summer 2017 I became a member of CELA and Bookshare. Thanks to the reading website Goodreads, I have data about the impact that these services for Canadians with print disabilities have had on my life: in 2015 and 2016 I read 33 and 40 books, respectively, before I had access to CELA. Pretty good, I thought, until I learned what difference having audiobooks and eText delivered by synthesized speech would make. In 2017, my books read total was 115 books. In 2020 I read 175 books. 

It’s pretty clear: when I became able to listen to what I was reading, I was able to explore content on more complex topics: I am no longer limited to teen and young adult books or fiction. I now regularly read—and comprehend and enjoy!—various memoirs, books on politics and world events, national security, and even government reports!

I am grateful for CELA, NNELS, and print disability services at my local library, all of which include book production services funded by the federal government, as well as CNIB donors.

I am even more grateful these services are available for free. Imagine walking into your local public library and only having access to a small fraction of books available on their shelves: this is what Canadians like me face without these services. While resources limit what books CELA and NNELS provide, many titles are dated or only available in certain formats, Bookshare provides access to 957,886 accessible books and is free to CELA members who submit Bookshare’s Proof of Disability form completed by a qualified medical practitioner. In the US, this service costs $50 USD per year—as a person who pays $20/month for an Audible membership, I’d pay this in a heartbeat, but we both know this fee alone could exclude many Canadians with disabilities.

Winnipeg Public Libraries provide access to 1.4 million books. People with print disabilities have access to, according to their catalog, 8737 eAudiobooks, and 7113 physical library materials accessible for people with print disabilities, including audiobooks (CD and cassette), Braille books, and DAISY (Digital Accessible Information SYstem) books. Of course, 15,850 accessible books on their own certainly can’t be seen as an “equitable” library experience. CELA and NNELS, including access to Bookshare, fill this gap and are critical to people in Elmwood-Transcona who use these services—or will in the future.

It goes without saying that literacy is extremely important for all Canadians. And that should be no less true for Canadians who read differently—whether that is, for me, reading through various apps on my phone, a friend who reads articles using VoiceOver on his iPhone, or another friend who reads his kids a Braille picture book at bedtime. Governments at all levels, including the federal government, should be doing all they can to promote literacy and reading to all Canadians. When cuts to print disability services are on the table, they aren’t doing that.

I hope you’ll join me in speaking out against this cut that yet again impacts Canadians with disabilities.

I’m happy to schedule a video call to answer any questions or explore more about how these platforms and associated technologies work to benefit me and my fellow community members with print disabilities! As always—thank you for fighting for all in our community.

In solidarity,
Kerri MacKay

If you, yourself, don’t live with a print disability, you’re welcome to share this article with your MP, get in touch (email/preferably tweet) with me if you’d like to share anything of my story/experience I’ve written here or if you’d like assistance writing a letter.

(PS. Mine is kind of long so be less wordy than me.)

(PPS. You can find out who your MP is here.)

Disclosure: While I’d have written this letter anyways, I occasionally engage in paid contract work from CELA doing accessibility testing. Though my CELA contact brought this issue to my attention, she stated these cuts are not currently expected to impact the small amount of work I do with them—but either way I’d be far more concerned about the broader impact of these cuts. I write this letter and article NOT because of my independent contract work with CELA, but because of the serious life-changing impact CELA and related services have had on my enjoyment of reading as an adult with a learning disability.

books

what i’ve been reading: march and april 2019

• by kerri

Apparently at the end of March I was so set to fail Nanowrimo—for which I reached 11376 of 30000 goal words, thanks, nonfiction nano is hard—I never told y’all what I read in March. So here’s a double update.

March 2019

I should have written this a month ago because my brain is pretty much about to fail me for tiny reviews. Oh well, either way, I read these.

Who Thought This Was A Good Idea: And Other Questions You Should Have Answers To When You Work in the White House – Alyssa Mastromonaco. Read on the road in Minneapolis, this book is a bit of a whirlwind (yesterday, I watched The Final Year Obama documentary and it would’ve been a great pairing with this book from a different perspective, I think), but definitely a good one for a road trip. At least it is if you’re a bit of a nerd, anyways.

Inheritance: A memoir of genealogy, paternity, and love – Dani Shapiro. Dani Shapiro does an online DNA test and discovers that her father isn’t actually her father… and goes on a quest to find her biological father (uncovering some ethical gaffes of the past in the process). 

Drop Dead Healthy: One Man’s Humble Quest for Bodily Perfection – A.J. Jacobs. Oh yes, back to the A.J. Jacobs memoirs I am. In this one, A.J. attempts to become the healthiest man on the planet, through a series of diets, exercises, and discussions with experts. I think anyways, it’s been awhile and a lot of books since I’ve read this, okay?

Thanks A Thousand: A Gratitude Journey – A.J. Jacobs. In this one, A.J. tries to track down as many people as possible in making his morning coffee and thank them, from the people who do the graphic design for his coffee shop, to the people who make the coffee cups and lids, to a journey straight to the source of the coffee. An over-exaggeration of a common mindfulness exercise, but a short-ish book.

The Know-It-All: One Man’s Humble Quest to Become the Smartest Person in the World – A.J. Jacobs. The one that started it all, where A.J. Jacobs reads the entirety of the Encyclopedia Brittanica, annoys people, goes on Jeopardy, and joins Mensa with much confusion involving people’s hug preferences on stickers/buttons. It was, I guess, moderately entertaining? But a pursuit I’ll never understand.

The Guinea Pig Diaries: My Life as an Experiment – A.J. Jacobs. In which A.J. takes on a variety of mini-experiments that couldn’t be their own books, like outsourcing his life to personal assistants, pretending to be a celebrity, and following all of George Washington’s random rules of life. Yes, I did have to consult the summary for these. The mini-experiment nature of these made this book good but harder to remember than the others.

It’s All Relative: Adventures Up and Down the World’s Family Tree – A.J. Jacobs. In which, again, A.J does something ridiculous and tries to host the world’s largest family reunion, trying to steal a Guinness world record from another family for the pursuit—after attending their family reunion also. A really bizarre but interesting examination of defining family.

Mind Without a Home: A memoir of schizophrenia – Kristina Morgan. Here’s what my two-star review says:
“The difficulty of writing in a way that gives a true representation of a mental illness like schizophrenia is what makes this book a difficult read. I couldn’t follow the lines of thought well, likely because this is just how the author and her brain coexist. It made for a difficult read where I felt I was crashing in and out of time periods and not knowing where the author was at in her illness. I know one of the themes was that she too didn’t know, but in order to become a bit more educated, I as an audience needed clearer lines to understand the ebbs and flows of the author’s schizophrenia, even if I am well aware clear delineation[s] such as these don’t exist in the real world.”

My Sister, the Serial Killer – Oyinkan Braithwaite. The week after I read this, the Bookshare twitter chat actually covered this book. I’m not sure if I just need to read it again or what, as certain aspects of the book (which are likely cultural) and a lot of symbolism was lost on me until I did the Twitter chat. This could be more as now that I am not in school, I don’t really analyze what I am reading and just want to enjoy it? Solid 3 stars, although many rank it much higher!

Missing: A memoir – Lindsay Harrison. Around this time in March, a friend’s son went missing. I began pouring through stories of missing persons in both books and podcasts, as a way by which to potentially wrap my head around how a person can simply disappear and not leave a trace. This book was gripping and at times heartbreaking, as a college student and her family wade through the experience, tumult,  confusion of her mother going missing, and their journey to find her.

The World As It Is: Inside the Obama White House – Ben Rhodes. Every so often, I need to go back to the good old days of Obama, despite not being American. Easily one of the best books I read last year, The World As It Is deserved a re-read. I can’t say I loved it as much as the first time, but maybe that’s because I found the actual audio-book and I’m just very used to the synthesized voice of Voice Dream Reader’s Will and Heather. Or I found it distracting not being read by Ben Rhodes as I hear his voice each week on Pod Save the World. Either way. Still a great book.

Books read: 11

April 2019.

Doing Justice: A Prosecutor’s Thoughts on Crime, Punishment, and the Rule of Law – Preet Bharara.  This book was a very real look at the criminal justice system, and the flaws it has from the view of a prosecutor—which differed from how I personally thought a prosecutor may look at the justice system. With a heart towards defendants, Preet Bharara explores themes in the US Justice system that are eye-opening. (For an ease-in, sort of, check out his interview on Pod Save America. It’s fabulous.)

Pants on Fire – Meg Cabot. I never thought I’d give a Meg Cabot book just two stars, but here we are. This book just felt… too basic to me? I don’t know, but the reviewers with the highest ranked community ratings/reviews on Goodreads have ranked it 1-2 stars too, so it’s clearly not Cabot’s best work. Which is still, arguably, All American Girl, in my opinion (did that ever get made into a movie? It was supposed to.). Or the Heather Wells series. Or 1-800-Where-R-U. See, lots of other good titles, this just isn’t one. 

Out of the Pocket – Bill Konigsberg. Last year, I read my first book by Bill Konigsberg, and I don’t know why it took me so long to read another. So I went in full force into this LGBTQ+ author’s remaining works I hadn’t yet read. It’s been years since I took the course Issues in Sport, but I feel like this is something that we should have discussed there but didn’t—the fact that sexual orientation in sports should be a non-issue but isn’t. Out of the Pocket is the coming out of a fictional gay high school football star and the societal reactions to a non-straight athlete… and whether or not coming out will ruin his future career prospects.

The Porcupine of Truth – Bill Konigsberg. This story is just unbelievable enough to be believable—but hey, its fiction, so anything can happen. Here’s the summary, because I don’t need to re-write it, but we all know I’m always up for a good road-trip story—and The Porcupine of Truth is certainly that and then some.

The Music of What Happens – Bill Konigsberg. A high-schooler needing money to help bail his mom out of debt gets a job at a food truck, which happens to be owned by the mom of a guy in his class that he’s noticed. Obviously they fall in love with some confusion, but also they are hit by a legitimate Series of Unfortunate Events, except not by Lemony Snickett, including the food truck being hauled away… and fighting to get it back. 

Let’s Talk About Love – Claire Kann. Okay so while we’re into LGBTQ+ characters, lets swing into another realm known as hooray, fiction about asexuals! Representation is important. Alice is perhaps the most awkward but classic character, her girlfriend broke up with her after learning Alice is asexual, only to develop a massive crush on this dude at the library she works at. But the part of this book I really, really loved was Alice’s relationship with her two friends she lives with, and how she stands up to her parents who expect her to become a lawyer when she really does not want to. It’s like, classic young adult life shit and confusion, with the twist of ace-ness that makes it different than every other story about a girl falling in and out of love.

The 57 Bus: A True Story of Two Teenagers and the Crime that Changed Their Lives – Dashka Slater. I think this book is written for middle-grade kids but the tone isn’t quite right, more suitable for a semi-academic read for an older crowd. The balance of story, fact and tone were awkward at times, and I think the author struggled to weave these together appropriately. The story of a boy lighting an agender individual’s skirt on fire on a bus leading to severe burns changes both of their lives, equally explores the factors that led both parties together on a bus for just a few minutes each day on the way home from school that led to the incident—and to learning and forgiveness. Certainly not everyone needs to nor should forgive their attacker… but the process certainly made for an interesting part of the story. 

The Pregnancy Project – Gaby Rodriguez. It sounds crazy but it’s true: a teenage girl, with permission of the school and her mother, faked a pregnancy for her senior project. Gaby’s mom and sister were both teen moms, and feels everyone is expecting her to get pregnant like they did. So, as a social experiment she “does”. I’m still so confused by the ethics of this decision on the part of the school, but this book was super interesting. 

Life Will Be the Death of Me… And You Too! – Chelsea Handler. Ugh, so I rated this three stars because it was generally enjoyable-ish, but also, every time I think of it my reaction is just that—ugh. Chelsea Handler is basically a famous person who can’t do anything for herself and finally figures it out, and then pays tons of money to famous psychologist Dan Siegel to help her sort out her not-normal-person-problems. Her problems are clearly valid, I am just basically irritated by the premise and tone of this book since like, she couldn’t figure out how to turn off her speaker because she never had to before and had to sleep with music on all night, and is just somehow able to have her dog running around in her first class pod? Writing this mini-review makes me feel like downgrading my rating. Anyways, I think my bottom line is: the self-discovery (of Chelsea) is interesting, but the anecdotes of not knowing how to do anything are annoying.
(I should probably add here that I’ve met Dan Siegel and done a workshop with him once at Stanford Medicine X. Which is clearly not therapy, but a fun-fact.)

Dear Nobody – Berlie Doherty. Teenage girl gets pregnant, teenage boy is the dad. The interesting thing is this is mostly written from the teenage father’s perspective, but also through letters from the mother-to-be to her unborn baby, whom she calls nobody. Predictable-ish storyline but still leaves you guessing at parts, like any teen pregnancy story should. (Well, save for that one two books up… the biggest twist there was knowing she was actually not pregnant, but I digress.)

Tash Hearts Tolstoy – Kathryn Ormsbee. I liked this book more than I’d thought I would, given it’s a fictional account of YouTube fame and all. I felt like it pretty accurately captured the weirdness of that kind of a thing, while having a character who was just quirky enough and had like, normal problems, like draining her college fund to go to a YouTube awards thing in Orlando, problems with friends, and a weird obsession with Tolstoy. It was kind of refreshing to actually see a character whose entire world wasn’t tragically falling apart.

Radio Silence – Alice Oseman. Not that this book wasn’t good but again it’s another of those let’s throw EVERYTHING into this book. Everything. type books. And at times, it’s a bit much because while life is truly chaotic, I get it, I feel like all the things in this one was a bit much. I could start to describe it, but we might be here the length of the book with all the things it contained. It was in no way bad, but yeah, a lot going on. To the extent I can’t even provide a summary other than it was based around a podcaster and a super-fan randomly knowing each other IRL without knowing it, and that spinning into a whole web of things. 

Books read: 12

Books read in 2019 so far: 49/115 – 43% to goal.

 

Again, what are you reading? Add me on Goodreads, I think we can still discover our book-matching-ness on there? That could be fun. (Yes, we can still discover our book-matching-ness but possibly only from a computer, not the app.)

books

what i’ve been reading: february 2019

• by kerri

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?

books

what i’ve been reading: january 2019.

• by kerri

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? 

advocacy / books / life / visual impairment

patient inclusion: how long overdue?

• by kerri

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.