Accessibility / Getting support / internalized ableism

Internalized Ableism, Week 2: DIY

Editor’s note: This is Pat Flewwelling’s first post with the Spoonie Authors Network. Welcome, Pat!

Grampa used to park his car umpteen kilometers away from work and then bike the rest of the way. By then, his hip was about 75% disintegrated, and he used a cane. In his off-hours, he worked for Gideons and for our church, visiting schools, balancing church books, organizing receipts. He may have left teaching in his sixties, but he didn’t truly retire until he was in his eighties. One cane became two, two became a manual wheelchair, and then a powered chair. Even when he had his manual chair, most of the time he never touched the wheels. He dug in his heels (literally) and pulled himself wherever he wanted to go.

After Sunday lunches, he’d roll out to his car, hoist up the back hatch, put his cane to one side, fold his chair and roll it over his lap into the car, grab his cane, and pick his way heavily and sorely to the driver’s door and get in. And wow: if you were family and offered to help—or, heaven help you, just assumed he needed help—you’d get a legendary, radioactive dose of stink-eye. Eventually, he admitted even that was too much and bought himself a fully adapted van. He was still driving at 92 years old. (And once texted me while driving. Let me tell you, boyo, he got a talking to when he got home!)

When Grandma had her stroke, he devoted himself daily—sometimes twice daily—to visit her in a series of nursing homes. It didn’t matter if it was 50 km away or five. It didn’t matter if it was sunny, raining, typhoon-style snow storms, or frogs falling from the sky. He never missed a day. My favourite memory of the later days of my grandparents was of Grampa heel-walking in his wheelchair, pushing a delighted Grandma along in hers.

As a result, I’ve internalized a different kind of ableism. Physical limitations weren’t a barrier for Grampa; they were a call to action, to do even more. Complaints were frowned upon. Excuses, laughable. Snowbanks? Bah! Ask for help, yes, but only after you’ve thoroughly confirmed that you actually need help. You did what you had to, with the tools that you had at your disposal, and you did it yourself.

On one hand, that attitude is laudable. Grampa was someone to live up to.

But on the other hand, some of what he did wasn’t safe. Texting aside, Grampa got tired. Twice daily hour-long treks, in snow, are exhausting for 40-year old commuters, let alone drivers twice that age. His reaction time was slow, despite being a bit of a speed freak (yikes). And there were times he fell asleep at stop signs. If it wasn’t for the army of angels flanking that van every time he ventured out, it could have been disastrous for himself and for others on the road.

And as for me, well…I am his granddaughter, through and through. I was in Vancouver when I fell over a sidewalk edge and trashed my ankle. For the next few days, between regular day job work, getting lost downtown, and working a book convention, I walked. The day after the fall, I racked up over 25,000 steps—more than 17 kilometers. I wrapped the ankle, snacked on ibuprofen like popcorn, and told everyone I’d just walk it off. It took almost two weeks to visit urgent care (and yeah, it needed a cast). Two weeks of unnecessary, nauseating pain, and four extra weeks for the ankle to recover, because I refused to rest it early on.

Apply that obstinacy to bigger issues: frequent bouts of gastro, career-limiting concentration problems, and most recently, tics driven by some as-yet undiagnosed neurological disorder. Adaptation and determination are virtues. Stubbornness and pride are not.

For years, I went on about life with long and frequent periods of “food poisoning” because “this too shall pass” (as Grandma used to say). But I never addressed it as something systemic, because frankly, I didn’t want anyone looking up my butt! Finally, after one honest discussion and two check-ups with my GP, it’s been IBS this whole time. On her advice, I changed my diet. “Food poisoning” magically went away. And no butt-checks were required.

Meanwhile, all my life, I struggled to sit still, to pay attention in class. I wished I could just stop daydreaming and get my homework done, or pay my bills, or wash my dishes, normal people things! Important, career- and credit-impacting things! I could write whole novels in 72 hours, and yet not survive a thirty minute conference call. Since everyone else seemed engaged and alert, I truly believed my distractibility had to be a personal flaw, one to despise, reject, and overcome. My job was on the line.

It never occurred to me that I had non-standard brain-wiring, until I researched ADHD for a novel I was writing, and I saw myself in the symptoms. Just five weeks ago, after months of consultations, I got the diagnosis: “Surprise! You have—and always have had—ADHD! Hyperactive and Inattentive. Good job!” New medications boost new habits of exercise, schedule adherence, and sleep hygiene, and work is a breeze and a joy. I’m light-years ahead of where I was. I can’t help imagining where I could be now in my career, if I’d stopped blaming personal flaws and sought help years ago.

Now, when it comes to these tics, I know I can get help and remain true to my upbringing. I want to know and address the underlying cause, and that requires professional assistance. But in the meantime, I can research similar conditions, discover and try practical habits, change my schedule, exercise more, read, listen, question, learn, and test everything that might help. If there is a medicine that will help, I’ll add it to my arsenal. And what I’ve learned, I can share with others, to help them get over, around, or through that snowbank of shame.

Hailing from Oshawa, Ontario, Pat Flewwelling is a project manager by day, hobbyist by night. She enjoys kayaking, fishing, knitting and crochet, gardening, archery, physical fitness, and other relaxing skills that will come in very handy during the zombie apocalypse. While she tends to write dark fiction, such as her 2019 novel Helix: Sedition, she also writes short stories in fantasy, science fiction, horror, and crime. You can follow her on Twitter, Facebook, Amazon, and Goodreads.

Author photo by c2 Studios Photography.

Leave a comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.