Freedom

Excuse me while I slip into my patented Rants Pants ™.

I’m going to make a very simple, polite request of you, and then I’m going to share a maddening picture, and then I’m going to rant for a bit. Ready? Here we go!

A simple request: please do not use the phrase “wheelchair-bound” or “confined to a wheelchair”.

Here is the picture:

DISCLAIMER: I actually love the sculpture here. It’s a very sweet tribute, and a very impressive bit of engineering. The picture’s awesome except that caption.

Okay. Here’s the rant:

I get what the original picture was going for, and it’s a very sweet sentiment, and the person who posted that picture meant well. How-the-fuck-ever, it is not accurate, honest, or just. It is exactly backwards. The wheelchair is not the confinement, it is the freedom. The wheelchair is not the problem, it is the goddamn solution. Until there is a cure for ALS, the closest thing we have is motherfucking technology. This modern miracle of metal and plastic and circuitry is the only reason I have anything close to a semblance of a normal life anymore.

I ain’t confined to SHIT.

The only thing I am bound to is this defective body. I am beholden to this shit-tastic disease. I am not confined to my wheelchair. I am not bound to it. It is not some magical item that I need to spend willpower on to activate. (That was an nerd reference for nerds.) The only binding my wheelchair provides is in the very literal sense when I am seatbelted into it for safety.

My wheelchair, the $47,000 marvel of technology that is the SS Opportunity, is my freedom.

Without my wheelchair, I would’ve had to quit my job more than six months before I actually did. Because I had the wheelchair, I was able to stick it out at work and have the energy to show up every day and do my work and still have some bit of energy left at the end of the day. Without it, I often went without lunch because I simply did not have the energy to go downstairs – literally immediately downstairs – to get some lunch. Without it, I had to constantly bother my fellow employees to do basic tasks that were actually part of my job such as fetching packages and mail because I did not have free hands to carry those things because I had a death grip on my walker. Without my wheelchair, I had to agonizingly plan every aspect of my work day to best budget the limited energy I had with my walker to get around. Without my wheelchair, I would have missed every work meeting I was not able to dial into. I would have missed every break room celebration of birthdays. Without it, I spent every day dehydrated because I couldn’t bring myself to ask a coworker to bring me something to drink as often as I needed it. Without it, I literally peed my pants at work because I was not able to get to the bathroom fast enough.

Even after my disability deprived me of my job, my wheelchair continues to afford me amazing freedom. Without my wheelchair, there would be no quick trips on my own to check the mail. Without my wheelchair, I would have to ask other people to lay out my clothes for me literally every fucking day because without it I cannot get into my closet. Without it, there would be no getting out of this apartment when I go stir crazy to catch a few Pokémon or whatever. Without my wheelchair, I would be confined to bed. All the time. There would be no grocery trips, no game nights, no dinners out with friends. My wheelchair allows me to do these things. My wheelchair is literally the only thing that allows me to leave the house. At all. Ever.

I fucking love my wheelchair.

So please, please stop saying ‘bound to a wheelchair’ or ‘confined’ or any other limiting word that is the exact opposite of what a wheelchair truly is. Until medical insurance covers palanquins, it is the key to my independence and literally the most liberating thing that I own.

deep breath

Okay, thank you for coming to my TED Talk. I’m going to take my Rants Pants ™ off now.

I love you. Please go about your business. And enjoy your freedom, as I enjoy mine.