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.

It seems like as good of a day as any to document the (partly strange) unfoldings of my life as they occurred today. 

1) Back to the old blog roots, I should first say I had my first pumpkin spice latte (iced, duh. But light ice.) of the season today. Honestly, while it was totally fine, I think there’s better stuff at Starbucks. But that still could be because they changed the pumpkin spice stuff all those years ago.

2) I had my annual visit with the psychiatrist for my ADHD meds today. She has moved her practice to her house and this is the first time I was there instead of the clinic. She once brought her dog to the clinic, but it turns out she has TWO DOGS and they have beds in the room she sees patients in, and when she told me to go have a seat in the room for the patients, I did not actually have a seat but went and crouched on the floor and visited the dog that was laying there all chill.

The other one seemed less chill about the whole thing, but also that was sort of nice because she was the greeting committee as soon as I walked in. Also as I left, I told my doctor about the 19 dogs I met while canvassing in the provincial election. Just in case she had any doubt I liked dogs, or anything.
But yeah, why is THIS the doctor I only have to see once a year? She has DOGS. 

3) I had a couple of phone meetings, which is a thing that happens when you work with people who live in BC, for a BC-based organization. (I am still pretty darn thankful they were like “hey, let’s ask this Manitoban to work with us”, because they are awesome.)

4) Here’s the weirdest story. As I was heading out for a NDP constituency meeting tonight, this kid on his bike stopped at the end of the sidewalk as my mom and I descended toward the street. 
He looks at me and says “Do you go to my school?”
He is like, SIX.
Child, I am TWENTY-EIGHT YEARS OLD, no, I most certainly do not go to your school, though I did more-and-less than TWO DECADES ago.  

I am used to people thinking I look younger than I am, but this is a little extreme.

And now I have a headache. I would say it was from the sheer confusion about this child’s question, but honestly, I’ve had it off and on since this morning, so it’s perhaps best that I stop writing (not that it will probably help.)

I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

—-

Do you know why Canada needs true national Pharmacare?
I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds. 

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today. 

  • I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer. 
  • I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.
  • Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)
  • Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on. 

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to. 

Am I happy to have some provincial coverage? Yes. 
Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time. 

Canada, we can do better.

—-

Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

It’s the first day of spring and, how they say, the anniversary of the first day of the rest of my life. There have only been three posts here between today and my last ADHDaversary—my fifth. And I can chalk that up, too, to ADHD.

The words from last year’s post are just as true today, except for some numbers that have increased by one. I’m still just doing my best to balance everything (which some days isn’t too good), to try to focus on what matters, to try to be mindful. Yes, ADHD makes that all a challenge, and general life makes it a challenge, too. That’s just how it works. We’re all constantly works in progress and I’m down with that (mostly. I mean, it can suck sometimes having to work at being awesome).

Every so often though, I’m reminded of why I share these stories online. And, without me realizing it this time until my ADHDaversary popped up on my calendar, just that happened yesterday. A friend from high school who I’ve recently re-connected with mentioned her current quest towards diagnosis of whatever may be causing her struggles with executive function (more about WTF that means here), and beginning ADHD medication. I threw her a blog link to my starting concerta post from 2013 and from a Facebook post she sent me a message, and a conversation began. (It also covered where has vegetarian/vegan gravy, because hello, you can’t expect anything to stay topical, who do you think we are? But I digress…)

Again, I was reminded that at least on occasion, people are actually reading this thing. I was reminded that you just never know who your story is going to impact. Not just in this case, but within a single-sentence story my friend told me:
“[My fiancée] originally actually told me about how you were instrumental in her getting her diagnosis and treatment!”

This is why the power of simply telling your story, sharing with people where you’re at is so important. Because someone who comes after you will also be there too, needing that reassurance that they are not the only one. No matter what that story is.

So, I will continue to trust the process that this, too, is getting to the right person, when they need it. 

Your story is important.
Keep going. 

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.

https://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.