It’s hard to ask someone about their disability without worrying you’ll say the wrong thing. So most people don’t ask Brandon. They ask me.
Here’s the thing — Brandon has a great sense of humor about all of it. This morning he sent me a post from another disabled outdoorsman: “Yeah, I have a disability. Dis-ability to catch fish.” We both about died laughing.
So I’m answering the questions we actually get, in the actual wording people use — kids, strangers, family, friends, whoever worked up the nerve to ask. Some of these will catch you off guard. We promise we already laughed about it.
But first, the medical background, because it’s useful context for everything below.
What Is Spinal Muscular Atrophy (SMA)?
According to Johns Hopkins Medicine, spinal muscular atrophy is a genetic condition that affects the motor neurons — the nerve cells in the spinal cord that control voluntary muscle movement. When the muscles stop getting that signal, they weaken and shrink over time, especially the ones closest to the body’s core: shoulders, hips, thighs.
It’s one of the more common genetic disorders in young children, affecting roughly 1 in every 6,000 babies. A blood test can tell you whether you carry the SMN1 mutation. If both parents carry it, there’s a 1 in 4 chance their child inherits both copies and develops SMA.
SMA gets grouped into types based on when symptoms show up. Brandon has type 3 — sometimes called juvenile SMA — which usually appears after 18 months and can show up as late as the teen years.
Most people with type 3 can walk and stand for at least some period, especially early on. Brandon walked until he was 12.
One thing worth knowing: SMA doesn’t touch sensory nerves or cognitive ability at all. It’s purely muscles and movement.
You can read more on Johns Hopkins Medicine’s SMA page.
What That Looks Like for Brandon
Brandon was diagnosed at 6. His type of SMA — Type 3, also called Kugelberg-Welander syndrome — mainly weakens the legs more than the arms, which lines up with what we’ve watched happen over the years. He’s lost the ability to walk. Life expectancy isn’t affected.
Intellect isn’t touched by SMA at all. It’s actually pretty common for people with the condition to be sharp. Brandon runs circles around most people I know — he just does it from a wheelchair.
Because SMA doesn’t affect sensory function, he still feels and moves his extremities just fine. He’s not paralyzed. He drives our vehicles with hand controls, no problem. He drives the boat, the four-wheeler, and the mower with zero modifications. Give him a hand getting into the driver’s seat, and he’s off.
He’s got two wheelchairs. His electric chair does most of the work, but the manual one comes along when we travel and don’t know the ramp situation, or on trips where the electric chair just won’t fit.
Now that we’ve established what SMA type 3 is and how it affects Brandon, let’s get into some of the questions he’s been asked.
“What’s got you all crippled up?”
— Friend’s neighbor, meeting Brandon for the first time
Brandon’s answer: “You should see the other guy.”
I wasn’t there for this one and I wish I had been.
An older guy, baby-boomer generation, asked this within about thirty seconds of meeting Brandon. Brandon came in hot with the comeback.
He actually respected the guy for asking straight out. They’d never met, and the guy still led with curiosity instead of tiptoeing. It took me two or three years of knowing Brandon before I worked up the nerve to ask anything at all.
He just answers. No bracing for the question, no script. To him, it’s not that deep. He’s just Brandon.
“What put you in the chair?”
— Multiple strangers
Brandon’s answer: “My parents.”
I joke, but I’d love to see the look on someone’s face if he actually said that with a straight face.
We both get some version of this question constantly. Most people are picturing a big moment — an accident, a virus, a procedure gone wrong. They’re almost relieved when they find out that’s not what happened, and then pity shows up as the backup emotion. It’s a strange kind of math — like the reason behind it should change how sorry they feel.
“Brandon, your feet are moving!”
— A coworker, after five years of working together
Brandon’s answer: “What?! Really?!”
He never missed a beat.
What makes this one better is it came from the director of HR, who I’m fairly sure shouldn’t be commenting on an employee’s medical condition. Happened anyway.
Yes — Brandon has feeling and mobility in all of his extremities, even in the chair. He doesn’t have the strength to stand or lift his legs, but he can wiggle his feet, toes, and legs whenever he wants.
Apparently, five years of working together wasn’t quite enough time to notice.
“How can you hunt in a wheelchair?”
— Friend’s 4-year-old daughter
Brandon’s answer: “My legs don’t work, but my arms do.”
Watching a kid process that is one of the best parts of these conversations. Confused, then understanding, then a little embarrassed they asked — and then either a hundred more questions or none at all.
We told her about his Trackchair, the bigger chair he uses in the woods. Her eyes got huge when we explained it crosses rivers, climbs over logs, and rolls through snow, and that it has a built-in rest he uses to steady his rifle.
We also told her he has a permit to shoot from a vehicle, which is how he grouse hunts.
“I don’t think you can drive a vehicle on this trail.”
— A guy on a wheeler, mid-conversation, clearly a few beers in
Brandon’s answer: “I don’t think you should be driving at all.”
The best comebacks always show up after the moment’s gone.
Once grouse season opens, we spend a lot of time driving state trails. An able-bodied hunter has to get out of the vehicle to legally harvest a bird. Brandon doesn’t — his permit covers that.
Best part: he barely needs help to go bird hunting. If he gets one, I’m a phone call away, or he sends our golden retriever, Rye, to fetch it. Rye retrieves the bird, hops back in the van, done.
“How does he go fishing?”
— Brandon’s 6-year-old nephew
Brandon’s answer: “In a boat.”
Yeah, but how does he do it?
Kids are literal. They’d watched Brandon bait a hook, cast, and reel one in from shore — what they actually wanted to know was how he gets in and out of the boat, drives it, and does all the physical parts himself.
He doesn’t, not alone.
There are things Brandon can do fully on his own, and things where he needs a hand getting set up. When we first got together, I’d never backed up a trailer or loaded a boat in my life. I’ve gotten good enough now that I can out-back-up guys who’ve been doing it for decades.
I’ve also gotten good at transferring him wherever he needs to go. For the boat, I use a step stool to get high enough, set him down in the aft, then prop him into his pedestal seat.
Once he’s there, he’s good to go.
“Can you swim?”
— My dad
Brandon’s answer: “We’ll find out.”
My parents live on the Mississippi and had heard about Brandon’s fishing habit before they’d met him. The first time they met, my dad had already built him a floating platform out of 55-gallon barrels strapped to a ramp — and then asked this, after the fact.
Yes, he can swim. I wouldn’t call him a strong swimmer, but he’d make it to shore.
“My mom and dad can do it.”
— Friend’s 3-year-old daughter
Brandon’s answer: “I’m sure they can.”
Kids are brutal.
This was about an outdoor spigot at a friend’s house — the old lever kind, seized up with years of rust. Brandon’s stubborn about trying things solo first, but he’s also practical about when a job needs more leverage than he’s got. This was one of those.
Worth noting: half the adults there couldn’t get that spigot open either.
“Is there anything I should know about your disability?”
— Me, right after agreeing to a first date
Brandon’s answer: “That’s the sweetest question you could’ve asked.”
We’d already been friends for a while, but I knew if this was going to turn into something real, I needed to actually understand it. So we sat down and talked through it — every hard question I had.
Turns out none of it was hard for Brandon. It’s just his life. Not always easy, but he figures out a way. Sometimes that takes creativity, sometimes it takes help, and it’s all worth it to him.
So, Can You Ask About Someone’s Disability?
I think you can.
More importantly, I think you can ask respectfully.
People are curious. That’s normal.
What tends to make things awkward isn’t always the question itself. It’s the assumptions that come before it.
If you see Brandon in his wheelchair and wonder what happened, you can ask.
If you’re wondering how he hunts, fishes, drives, gets into a boat, or manages something you wouldn’t know how to do from a wheelchair, you can ask that, too.
You might get a straight answer.
You might get a smart-ass answer.
You might accidentally ask a question that makes both of you laugh.
And you might learn something you never thought to ask about.
Brandon is pretty much an open book.
Just don’t expect him to give you the answer you’re expecting.
Because after all these years, I’ve learned that the wheelchair is usually the least interesting part of the story.