How would you feel if…
Wait. Back up a bit.
Roomate is a tinkerer. They love to watch shows that focus on making machinery “How It’s Made,” “The Works” “American Chopper.”
So, last week, my new manual chair arrived, and when I was sitting in a recliner, roomate decided to tip it back, and examine and spin the small wheels over and over and over….I was remembering a story they told that they dissasembled an entire vacum cleaner as a child ‘just to try and put it all back together.’
“Stop,” I said reasonably. “It’s my chair and you cannot fiddle with it.”
“I’m not fiddling with it, I’m just spinning the wheels”
“You can’t use the chair as project. Stop, please.”
“I’m not-”
“You could damage-”
“I wouldn’t-”
Me exasperated, “Not *intentionally* no, but you still might-”
“I’m *NOT* doing anything to it! I’m just *looking at it.”
“Let’s try this another way. How would you feel if you had prosthetic legs, and someone picked them up while you were sitting/laying someplace and they picked them up because they were intricately constructed and they wanted to see how they worked. Unintentionally someone breaks a small piece (but a vital one) and hey presto, you have a repair bill, or have to get a new set altogether.
The chair is my *feet!* How would you feel if some medical student felt your legs were fascinating, removed them in some magically painless way, and started to reverse engineer them?”
I’m not saying I wasn’t over the top. But the grit of the argument has not convinced roomate in any way.
Machines are machines, and are fascinating items to tinker with and fair game in my house. The roomate is careful, and never intends to damage.
I’m an only child and it shows.
My stuff is *my* stuff.
A difficult thing to read, understand and admit…
Adults with disabilities/impairments are not safe. I’m not talking about neglect or overt abuse… We cannot move about without risking problems. We cannot always speak our minds because others *assume* they know what’s best…
There are so many situations that we can come into that prove we are not safe…
Here, where the simple act of making a necessary medical decision can be misread or ignored from someone with no cognitive impairment whatsoever…
And here, (LiveJournal Account required) where the able don’t stop at taking our spaces, they go several steps further…
Or, early in the summer when any mobility I had was taken away from me in the hospital “for my own good” for ten hours….
Do these and incidents like them mean our independence is some fragile piece of art that can be knocked over by the first careless art lover or “dissapeared” in a moment…?
It does feel that way sometimes.
Freedom
The able just don’t get it sometimes…or even most of the time depending on their level of exposure to those with impairments.
Using the manual chair and the scooter is not (at least for now) increased captivity or imprinsonment.
it is Freedom.
Freedom from (most) falling.
Combined with a paratranisit van, it also means Freedom from concern over how to walk over ice…or snow…
Freedom from fatigue from walking too far, standing too long…
Freedom from not being able to carry things
Freedom from being the person who always moved the slowest.
Reduction in joint stress, arthritis symptoms.
Freedom to explore large accessible venues (concerts, malls, parks, etc etc etc…for as long as the batteries hold out *without fatigue.*) That is a marvel.
If anyone is out there who has come to the point where it’s darn well time to take a seat.
I hope that eventually they come to see it as freeing rather than confining…
(now if it’s a manual, and someone has to help push….there’s always that negotiation which, I am aware can be a pain in the ***. “She’s lazy. She just wants to be pushed around and do nothing for herself…” Just no.)
Home
I like Friday nights.
Because I get to come home, with an entire weekend ahead of me where…
No outside “productivity” standards to meet.
I can play the same music 30 times and no one cares.
I can lose myself in my latest addiction, the political gabfest shows (PBS,NPR) and no one says boo.
I can dress comfortably
I can go barefoot (helps in maneuvering manual chair without wrist usage)
I’m allowed to watch crappy television that I don’t dare admit I like in public
I can stay up late. (I still get a charge out of that, as if I was in high school.)
I get things done, but they’re on my timetable and *thats* fine.
I can expand my food choices a bit, because I am safe at home.
I can peruse the free movies offered by my cable service and choose one that suits my taste and complete it before the roomate comes home.
I like having a space where the rules are mine.
There are a bunch of lousy things about managing your life yourself with few family or friends physically nearby…
But running your own show in your own place *at your own pace,* without complaint or much criticism… That is a good thing.
For those with Mental/Cognitive Impairment
I really love this statement.
Quoted below: (hat tip also to the JusticeForAll Listserv)
* Recovery is possible for everyone. [italics mine]
To recover, we need services
and supports that treat us with dignity, respect our rights,
allow us to make choices, and provide assistance with our self-
defined needs. This range of services must include consumer-run
and -operated programs.
* Self Determination: We need to be in control of our own lives.
* Holistic Choices: We need choices, including a range of
recovery-oriented services and supports that provide assistance
with housing, education, and career development.
* Voice: We must be centrally involved in any dialogues and
decisions affecting us.
* Personhood: We will campaign to eliminate the stigma and
discrimination associated with mental illnesses.
Midlife And Treachery 
