After Disability, Ask Different Questions

The most helpful question I learned to ask after becoming disabled wasn’t “Why me?”

Photo by Romain Virtuel on Unsplash. Image Description: A woman in a wheelchair propels herself along a road with mountains in the background.

No one really expected the stroke that came after my brain surgery. When the medical team broke down the numbers, surgery looked like the safest option.

I’d already had one small hemorrhagic stroke due to my previously undetected brain arteriovenous malformation, with a 4–7% chance per year of another bleed. This first one hadn’t caused any permanent damage. But next time — and there would likely be a next time, given that I was only 21 years old — I might not be so lucky.

Surgery to remove the AVM carried a 25% chance of temporary damage and a 10% chance of permanent damage. That meant there was a 75% chance of resolving the problem with no lasting effects at all.

Yes, I did have a stroke after the craniotomy successfully resected the AVM. But it wasn’t in the exact area of the surgery, leading my sister to later say, “It’s difficult to have a Mixmaster in your head for 12 hours and not have something unexpected happen.”

It’s Not That Simple, Of Course

A life-altering event rarely is.

When I talk now with people who have newly acquired disabilities — people experiencing major changes in roles, identity, or the ability to “show up” in life the way they used to — I recognize so many of the emotions I had after my own stroke:

• Grief

• Anger

• Sadness

• Confusion

• Fear and uncertainty about the future

All of those emotions are okay, even when they arrive all at once.

A good starting place for sorting through them is to name what’s changed — and what hasn’t.

What Is Real Now?

This part matters: Don’t name what society is telling you has changed, because society’s narratives about disability are often inaccurate.

If you listen to what society says about disabled people, you’ll hear things like:

• You can’t contribute — to workplaces, communities, relationships, or society at large

• You have to prove your humanity in order to deserve support

• Accessibility isn’t a priority because inclusion costs money and effort that society isn’t willing to invest

Instead, try naming what has specifically changed for you, while remembering that the list may evolve over time.

Ask yourself:

What is real now?

My own “What is real now?” list coming out of inpatient rehabilitation looked something like this:

• I didn’t need constant supervision, but I would benefit from living with someone else in case I fell, had a seizure, or needed help with activities I was still learning to do one-handed

• Because of my seizures, my driver’s license had been revoked

• I could walk short distances with a cane, but still needed a wheelchair for longer outings

• I fatigued very quickly and couldn’t work

• Since I had no savings and couldn’t work, I relied on the Ontario Disability Support Program for income support and medical benefits

My father agreed to take me in, which shaped the next layer of reality:

• My life would now be centred in the small community where I grew up — the same community I’d sworn I would never live in again

• Because there was no public transit and very limited transportation options, my father and a few family friends drove me everywhere

• I tried to avoid using my wheelchair publicly in town because I hated the way people looked at me

• I didn’t apply for work for several years because I was convinced no one would hire me anyway

What Are the Possibilities?

I’m not entirely sure what prompted me to eventually start asking a different question:

Now, what are the possibilities?

Maybe it was my father putting my name on the subsidized housing list almost as soon as I moved home. He reasoned that by the time a unit became available, I’d probably be ready to live independently again.

I certainly wasn’t thinking that far ahead yet.

My disabilities have always been real, and they’ve required me to reframe parts of my life. But over time, the reframe slowly shifted from:

“I’m disabled, so I can’t do that anymore.”

to:

“What is still possible here?”

I’m never going to become even a polished amateur dancer. But I loved the adult ballet barre class I took on Saturday mornings for a year, even though my left foot mostly rose a few inches and looked deeply confused by the entire experience.

I haven’t gotten interviews for most of the jobs I’ve applied for in my community. But I still apply sometimes to see how far I can get, and I genuinely enjoy my current job at the boutique on Wednesday afternoons.

And during the years when I really couldn’t get hired anywhere, I wrote.

And wrote.

And wrote.

Because I loved writing, I was good at it, and I had time.

Now I have my own business that lets me keep doing that.

Possibility Isn’t Gone

Acknowledging reality matters. There are things I genuinely can’t do now.

I’ll never do the kind of work I originally imagined for myself in the disability sector because my physical disabilities simply make me a poor fit for it.

But I found another place for myself.

And I know I’ve changed lives, because people have told me so.

I wouldn’t choose having a stroke, if I could do things over. But I can acknowledge that meaningful things grew out of what happened to me.

Disability changes lives.

It does not end possibility.

Happy Monday!