It’s a Normie World (pt. 1 of many)

We shan’t debate here how the world was created, but the Normie built it.  (Normie– a person who isn’t a Spoonie.  Simple enough, yes?)  And when the Normie built the world, they did not think about the Spoonie.  Sure, the lovely Americans with Disabilities Act and other such legislation has brought the Spoonie’s needs to THE Normie’s attention, but  A Normie can never understand what it is really like to be a Spoonie until he has been a Spoonie himself.

Are you a Normie who has graced my blog with your presence?  Next time you’re out somewhere, stop thinking about yourself for a moment (everyone does, it’s ok) and think about the place you’re in.  Imagine you rely on a wheelchair.  Or crutches.  That makes you a Spoonie who’s at least lucky enough to get out of the house.  Now–how does your new imaginary mobility aid impact your life?

Let’s look at my outing today, shall we?

Today we (hubby & I) went to the bookstore at my university to buy textbooks.  I praise my university because there are power switches on the majority of the doors, at least the ones to enter buildings.  It doesn’t have them on all the classroom doors, though.  Time to turn on your imagination again.  Let’s pretend that there weren’t power doors.  I am a forearm crutch user.  Doors on college campuses are, in general, heavy.  Now, pushing on a door is easier.  I unlatch it so it’s cracked open, then turn around and back through it, so that my whole body weight is used  to open the door.

Pull doors are much more difficult.  I have to get the door open, wedge it open with my crutch, and then try to keep the door open while both my hands are trying to use my crutches to help me walk through the door.  Not easy.  Not really even possible.  I praise the inventor of the power door.

Now we’re in the bookstore.  I have a lean build, but then add crutches and I need three feet of space to walk through.  Piles of books and boxes in aisles do not help me.  I’m likely enough to fall on my own as it is.  Fork, that’s part of the reason I use the crutches!  Getting my crutches tangled up is frustrating and painful.  And it takes even more effort walking around trying to find a more accessible route.  And a wheelchair would not have fit down the aisle.  Many walkers and rollators would have the same issue.

And with crutches, your hands are occupied.  You can’t carry things, like, say, a stack of textbooks, or a basket, etc.  Crutch users wear backpacks.  They stay out of the way of the crutch and keep the weight balanced.  But stores generally frown upon shoppers putting unpaid merchandise in their backpack.  Yes, I had my husband with me.  In fact,that’s the reason I took my husband with me.

The bookstore list came out this morning.  I raced to the bookstore today partially to get as many books used as possible, and partially to avoid lines.  Part of the reason for using a mobility aid is because I can’t stand for long periods of time.  Standing causes pain and muscle fatigue… standing in line for an hour to pay for books could well mean bed-rest for the rest of the week.

Fellow Spoonies, I’m sure you commiserate, and even have your own horror stories to tell.
Normies, I challenge you to try once in a while to look at the world from a Spoonie point of view.

As you may have noticed, this post says “part 1 of many.”  I plan on writing several other posts to this effect, about grocery shopping, school, the park, the doctor’s office, my apartment complex…

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

"Spoonie"

So you’ve read the link to my blog and made the connection between my nom de plume and the first half.  Ruminari  – Ruminari.  We all get that, right?  But then you’ve looked at the second and gone, “What the heck does the spoonie part mean?”

Spoonie.  Noun.  An individual with an invisible medical condition or disability who lives by the Spoon Theory.

The Spoon Theory is a lovely essay written by Christine Miserandino describing her life as an individual with lupus.  The metaphor contained in the story is that, on a typical day, a typical person has an endless supply of “spoons,” which represent the energy and physical ability to do things.  Everything costs spoons–getting out of bed, showering, getting dressed, shopping, cooking, cleaning, going to school, hanging out with friends,…   Sure, a typical person may not have time to do everything, and they may be tired after a really long day, but they are physically capable of doing pretty much anything they wanted.  A person with a disability in contrast has to know how many spoons he or she has and spend them wisely.  Cleaning the house may mean that you won’t be able to do your grocery shopping.   Going to the doctor’s office may mean that you won’t be able to cook dinner tonight.

As a person with a physical disability, each day can be a struggle, and every action is a choice.  Most able-bodied people don’t realise how much extra effort it takes to add one more text book to your bag.  Or everything that’s involved with shaving your legs.  Or making a peanut butter and jelly sandwich.  And there are some things that you may have to give up “forever,” like scrubbing the floor or going to amusement parks.

When you get up tomorrow, think about how you’re going to spend your spoons, and if you have a spoon to spare, come read The Spoon Theory.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)