We pay for it in money, in health, and in dignity… so why aren’t we the ones deciding?
Many people who work in services for wheelchair users need to go through basic training. They should spend a week in a wheelchair.
And no, I don’t want to hear the complaints.
“That’s dumb.”
“That wouldn’t work.”
Blah, blah, blah.
When I was a student at the University of Miami, a small group of us gave a tour to the Dean and other decision-makers to show them how inaccessible the campus really was. They didn’t last two hours.
Two hours.
They were flipping out of their chairs, stretching to stand up, frustrated, uncomfortable, and completely overwhelmed.
But somehow, these are the same kinds of people making decisions about accessibility.
That’s why I say: make them sit on it.
And by it, I mean those horrible, overpriced cushions that someone else somehow has the authority to approve for us.
The Cushion Conversation That Shouldn’t Be a Fight
It’s been a few years since I had to get a new cushion, but I still remember the chaos.
We argued about everything.
We argued about what I wanted. Yes, me — the person who would be sitting on that cushion for more than 12 hours a day.
We argued about the material.
We argued about the size.
But the price?
Oh no. That part was already decided.
Set. Final. Non-negotiable.
By who?
Insurance companies.
Medical supply vendors.
Seating specialists who won’t be sitting in that chair.
All of them with opinions.
All of them with limits.
All of them with the final say.
Sit There All Day… and Then Talk to Me
Imagine sitting in an uncomfortable seat all day.
Every day.
Would you be happy?
You don’t even have to wonder. I’ll tell you: you wouldn’t be.
But this isn’t just about comfort.
This is about health.
A bad cushion doesn’t just annoy you. It changes your body.
If you’re uncomfortable, you shift. You adjust. You try to find relief. I can do that too… for a while.
But eventually, your body adapts in ways it shouldn’t.
Your spine begins to curve incorrectly.
Pressure sores develop where they never existed before.
Your body gets tired because it’s constantly working just to hold itself up.
That’s my experience.
Now Imagine You Can’t Adjust
What if you don’t have the strength to shift your body?
That happened to Carl.
He developed a major sore on his buttocks because the cushion he was given wasn’t right for him. When he spoke up, he was told that was the best they could do. Custom cushions, he was told, were more expensive.
More expensive.
I wonder… are they more expensive than the medical bills that come from treating preventable injuries?
What This Is Really About
Let’s stop pretending this is just about cushions.
This is about control.
Somewhere along the line, the person sitting in the wheelchair stopped being the decision-maker… and became the person being managed.
Managed by insurance.
Managed by vendors.
Managed by people who will never sit on that cushion for more than five minutes.
And yet, they get the final say.
On our comfort.
On our health.
On our bodies.
We pay for this.
We pay with cash.
We pay with insurance.
We pay with credit cards.
But we also pay with our bodies.
We pay with our self-respect.
We pay with our discomfort.
And somehow… we’re still treated like we should be grateful.
Sit On It
So I think those people who feel they can decide our SITuation…
should SIT ON IT.
Not for five minutes.
Not for a demonstration.
For hours.
For days.
For a week.
Let them feel the discomfort.
Let them feel the pressure.
Let them feel what it means to not be able to walk away from a bad decision.
Because until they do…
they will continue making decisions they never have to live with.
And we will continue paying for them.
But hey, that’s just my bellybutton.
I wrote this article in 2003, when Audacitymagazine was a baby. Click here.
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