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.

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.)

Five years ago today I was inconclusively “diagnosed” with ADHD: my testing couldn’t fully diagnose ADHD, though did pinpoint a host of other learning issues and quirks about my brain, but they also couldn’t fully exclude the possibility of an ADHD diagnosis. That discussion marked a closure of sorts: gave me answers, and affirmed the fact that no, I wasn’t dumb, and I was in fact trying as hard as I could—my brain just has wiring that’s a bit different.

Over the last five years I’ve navigated what that means—and I’ll probably spend the rest of my life figuring it out. I’ve embraced that I “see life differently”. 

Embracing ADHD though, doesn’t mean I’ve stopped questioning what might have been different had I been diagnosed with ADHD and learning issues earlier—unfortunately. Perhaps one day.

i’ve got scars i’m willing to show you.
you had heart that i’ll never see
she had answers to all the wrong questions.
it’s funny, these answers are all that i need.

caldecott tunnel, something corporate

From twenty-one to twenty-six, things have changed a lot in those five years since my diagnosis—many, if not most, for good. I’ve written before about wanting back certain elements of myself from certain points in my life—coincidentally, today, I feel I might be closer to that. Whether a method of procrastination or of opportunity, I danced today for the first time in ages. I paused once in that 34:40.61 span of time to make a note in my journal—another activity, like exercise, I did much more frequently in 2011-2013 than I do now, and one I am obviously better off for doing—both in general and specifically for my ADHD.

During that time when I was flailing around “dancing” (because I can’t dance, and I don’t care, ‘cause it feels good), I also again remembered it was my ADHDaversary, and reflected on that, too. How I’m still the same but, because of the knowledge packaged in a diagnosis, so different at the same time.

http://i1.wp.com/farm1.staticflickr.com/814/26058201787_88de295d50.jpg?resize=441%2C441&ssl=1

When busing back and forth from assessment appointments, I listened to a lot of Something Corporate, and found specific relevance in Caldecott Tunnel. Mostly for this one line in the midst of the process—and for the one above after the fact.

we end up regretting the things we don’t try.

caldecott tunnel, something corporate

Here I am, five years later. Appreciative of and still wanting everything I know now, but also wanting elements of my twenty-one-year-old-self—who was figuring shit out much the same as I am now.

And knowing somehow, someday I’ll get there—or a different version of here. And will continue to embrace the good of ADHD… and work on doing better at embracing the moments I hate my ADHD, seeing the not-so-good for what it is and working with it. In the meantime, I’ll enjoy the journey—because let’s be honest, an easily distracted and differently thinking mind has to be a lot more interesting to live with than a neurotypical one. Not that I will know that world, and nor do I want to. 

If I had a normal brain I wouldn’t be me, after all. And being me has been a pretty wild ride so far.

I think the added impulsivity helps with that. 😉

 

I’ve got a lot of amazing allies who have been my biggest supporters through the earliest days of questions and all of the days since I got the answer of ADHD. Jay – as always, without you I am unsure I’d have persisted in accessing the assessment—thank you for all your support finding resources early on, and in the last five years. Seriously not sure where I’d be without you. Tash – for throwing e-mails back and forth in all phases of the process. and sharing your own adult ADHD/ASD journey with me so candidly; you pushed me to learn more about myself. The Smart Girls with ADHD admins—Beth, for creating SGwADHD, Nikki, Liz, Nathalie and Matti. Rob, Theresa, and everyone else I’ve connected with online. Thanks for helping me to be more awesome.

I’ve probably missed some of you. If you’re reading this, well, you likely deserve to be on this list too. Thanks for being a part of my story.

This thing is cool.

http://i1.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.

Hello, October.
Hello, Fall.
Hello again, ADHD/learning disabilities awareness month. 

My last 3 posts have been somehow swallowed up by StableHost following a tech issue last week. I’m really unsure what the deal is, but they have been trying to help me for several days and I am just hoping that I can actually start my October blogging on time. Because, like last year, I have plans.

Plans to hit refresh on the blogging, and this time, perhaps try not to throw myself into too many things at once, although we know that, hello, it is me. That’s not going to happen. Like last October, things will look roughly the same around here:

  • Self-Care Sunday
  • Mantra/Motivation Monday
  • Travel Tuesday (as I still have many things to report on!)
  • Wordless Wednesday (honestly, because I am lazy)
  • Tech Thursday
  • Fun Fact Friday
  • Recap Saturday (in which I will perhaps tell you just normal stories or tales of my ADHD brain from the week.
Since we missed Recap Saturday this week, here is an ADHD story for the week:
 
I went into my room to find a specific hoodie from my closet-I-mean-floor, and I could not find it. I resigned to another hoodie and picked it up and carried it out of my room.
The hoodie I was looking for?
I was wearing it.
Um yes. Hello, ADHD.
 
So, welcome to the adventure, people.
Now let’s hope my blog stays functional.