A year ago today I went to Costco. We had a birthday party for my grandma’s 85th birthday.

We had four travel-related cases of COVID-19 in Manitoba. Four.

We debated canceling the party, but didn’t. My mom, aunt and I went to Costco, picked up a cake, and saw a guy wearing a full face respirator mask.

I mean. We thought that was a bit overboard. We were just there to check out if they’d restocked all the toilet paper and other stuff that had sold out with people lining up like mad on the infamous Friday the Thirteenth. (They had. It was pretty uneventful.)

I had not really considered that’d be the last time I’d go to the store for a few weeks, never mind a whole year.

First my doctor’s assistant asked if I was self-isolating. I was. Then my doctor told me to self-isolate. She’d semi-revoke that 3 months later, probably realizing the length of the situation at hand was potentially interminable, but it’s been a year and I’m still avoiding the general public, mostly because I don’t have to go anywhere. Severe asthma may not be as big of a risk factor for severe COVID outcomes as once thought, but that doesn’t necessarily mean it’s not one. If I don’t have to go anywhere, why risk it?

It’s been a year of learning, of scientific innovation, and of science finding better answers—sadly causing some to lose faith in science because the evidence changed, or finally feeling emboldened to show their true colours because of widespread “acceptance of pseudoscience and conspiracy theories taking even deeper hold as people lived their lives online. PSA: Science can change our opinions, that means it’s working. Masks help. Vaccines work and help more.

(And if my vaccine has a microchip in it, I just want it to have debit, thanks!)

It’s been a year of outdoor visits with only a few friends. A year of FaceTime, Facebook, and Zoom catch-ups. A year of reconnecting and probably less losing-touch than I’d have thought—aside from a couple people I’d begun to reconnect with, we’d sadly already lost touch. At least we are now rarely at a loss for conversation, with the weirdness of COVID-life always a fallback option. And of course, a year of Guide Dog Murray visits every month or two that really help speed a week along.

I need more hobbies I’ve discovered. I’ve tried jigsaw puzzles thanks to Lana and I don’t hate them like I thought I would. I still haven’t baked any sourdough yet, but I’ve made bread. And cake. And hand pies. And ice cream—a lot of ice cream.

Hand pies made today: National Pie Day 2021

At some point last spring I pulled my Nintendo 2DS out. I tried Animal Crossing: New Leaf, eventually getting a Switch Lite for the full pandemic experience of New Horizons. That held me for about 8 months but I’ve now moved onward to Pokémon, at least for awhile. The video games though have, perhaps unexpectedly, led to reconnection with several people, for which I am grateful.

I’m past ready for the unprecedented to be over. I’m sure we all are. To be a year in and still know going to a restaurant like we did just over a year ago is quite a long way off (at least it is for me) is rather bananas.

It’s been a weird—and in ways wild—year. And there’s at least hope in sight that things may return to some sort of normal during 2021, and more-so, for 2022 when maybe we can see people’s full faces again.

Kerri wearing pink jacket and blue Winnipeg themed face mask

And as always; thanks, science. Thanks doctors and nurses and researchers. Thanks all frontline and essential workers. It’s been a year, and I hope you all know how much we need and appreciate you.

Oh, and I wonder if that guy in Costco with the full respirator is still wearing it or if he’s downgraded to something else.

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.