Sunday, March 30, 2014

I Am My Wheelchair and My Wheelchair Is Me

Today, a close friend called me with somewhat of an emergency.  Her wheelchair had suddenly given up the ghost, she didn't have a backup, and could she please borrow my scooter for a few days?

I, of course, said yes. I have my new powerchair if I need it, and as any plans I may have had were derailed smoothly by a bout of the chicken pox, I wasn't planning on needing either my chair or my scooter for at least another week.  Besides, my friend had an important meeting on Tuesday which she couldn't afford to miss. I was happy to help her out.

But I can't deny that it feels queer - queer in the "odd or strange" sense of the word - to know that someone else is out there, using my scooter.  That scooter was the first piece of true independence I ever had, the revelation that I could sit and move at the same time.  It was with me though times of great happiness and times of great sorrow.  It literally propelled me through some of the most difficult moments of my life.  It carried me through so many adventures during my three years of college.  It got stuck in the snow, tipped over on a rocky path, and explored the far reaches of campus and town.  My scooter was my chariot, my scooter has a history, and right now it feels like someone else is wearing my skin.

The title of this piece makes me uneasy, because I don't want people to make the assumption that I am defined by my wheelchair alone - of course not.  I am not the human embodiment of a wheeled mobility device.  But I can't deny that my scooter - and my other mobility aids, for that matter - take on sort of lives of their own by being mine.  I know them all, all their little quirks and creaks.  And while I"m still getting to know my new chair, I have no doubt that I'll come to know it just as deeply as I know my scooter.

So when I or someone else tells you not to touch their mobility aids without asking, when we become uncomfortable when you commandeer our wheelchairs to play racing games, when it takes us time to break in a new aid or when we cry to see our old ones go - please respect that.  Because our mobility aids are not merely machines, they are part of us, intertwined with our history and our lives.  Please, treat them with as much respect as you would treat us.  All our lives will be better for it.

6 comments :

Tarah Schaeffer said...

I so agree with you on this one! My power chair I call Bertha because shes big and a total beast! Shes had almost as many repairs as I've had surgeries. Without her I would be nowhere near as independent as I am today.

Rb rb said...

lets see ive had my "ride" since i graduated HS 13 years ago and it still runs like new its an extention of me as is my manual chair sure it doesnt define who I am but it still is my car so to speak when im not in my car which is also an extention of me

apulrang said...

I used a scooter too when I was in college, and I adored it. As a matter of fact, I use a ventilator at night to help me breathe, and I love it, too. This is so instinctive to us, and yet so strange to people who have a different mindset about disabilities. Thanks for putting this into such eloquent words!

imfunnytoo said...

I have an old scooter and a new power chair and I've just not been able to part with the old scooter until now space requirements I have to move it and probably store it. it will be insanely hard to let it go even though it hasn't worked for years for the reasons that you post about.

imfunnytoo said...

I have an old scooter that I probably should have disposed of long ago but did not for the reasons you talk about. Great post. Is this duplicates I'm sorry having trouble with WordPress tonight.

Ianto Jones said...

I completely understand the attachment -- powerchair user for over 20yrs -- but would add a minor side note to some of the comments above:

When you (any of you) *do* have a newer mobility device, that meets your needs better than your older, cherished one, and therefore will only be storing the other one for sentiment...perhaps consider, with love, letting your older device go on to another home (possibly by Craig's List, or even a low price on eBay)?

I know it can be hard, but I have been on both ends of such a transaction (donating older chairs, and more recently, purchasing a used one at a fair price), and -- both are *amazing* feelings.

Seeing someone elderly who couldn't afford one, getting that gift of freedom, and knowing that feeling.

And now -- I have insurance, but the 20% copay for the high-end chair they recommend, is still several month's pay, which I can't do.
So when the lemon I'd had last from them (and spent thousands trying to get it to run more than 2hrs in the first place), finally died completely, I had to find my own replacement online.

It doesn't have the seating I need, so my hip is almost constantly in spasm, but I *can* leave home again! and do more self-care *at* home, so it beats my old manual chair all hollow.

Anyhow. Just a fellow-traveller's experience.
Maybe food for thought?

I liked to think my older chairs were happier in their new homes, having new adventures I couldn't have given them. And I know the used one i purchased, is having a good life with me, if a bit coddled.

All my best to all of you!