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.

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.

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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.

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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. 

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.