Odd moments (crossposted to my blog at disaboom)

You are one of three people I have ever called a hero. Mom is one. A fellow writer and good friend is one. You are one. You are one and have been one for as long as I have known you for so many reason.

This is just one more box to check. I like my label for you bestest!

. . . but am I inspirational for opening doors myself? :-P

Opening doors how?

Are you using telekenisis?

Are you using your super human gripping mouth?


Baby you are definitely inspirational for open ing doors yourself!

:-P

It's the telekenisis; wows 'em every time.

I knew it!

XOXO.

No one's called me disabled yet. I'm trying to resist the urge to speculate about that. (I think at least some of them are clinging to the idea that my condition is temporary.)

It took me a while to decide that the word does apply to me. I should start saying it out loud more often.

I found it empowering, the word "disabled," although shocking and confusing at first, of course.

I am not sure, yet, how I feel about "paraplegic." Mainly because I was forced to check a box and today I'm walking around the house with only a slight limp.

Nothing on that list fits me. (I was hemiplegic for a time, but that was months ago.) I guess I'm not Disaboom material.

I agree that "disabled" is an empowering word. I've been meaning to write an lj entry about my ambivalence about it, but lately I've been too fatigued disabled to sit down and do it.

I should say that an exhaustive list of conditions followed that, one of which was "stroke."

I had a feeling there was more than just that short list. (I wasn't assuming there was any intent to leave anyone out- people who come up with content for websites can make some appalling errors.)

I really don't like multiple choice questionnaires about this. There is the pre-supposition that it is a very neat package. I can tell by the list that they are thinking total loss of something; spinal cord injury, brain injury of some kind, trauma causing loss of limb or eye.

Disability just isn't that simple. If one were to work in a rehabilitation hospital it is true that most of the people you would see, would fit into those nice tidy boxes. Problem is that most of the people out in the world with disabilities are not at all tidy.

Our particular state has an incidence of MS nearly twice the national average, and there are other rather invisible disabilities which are also prevalent. They should have an "other" box with a character limit. I know we are always trying to force people to be concise. ;)

I should have said that after the "level of function" list was an exhaustive list of conditions which covered the gamut, as far as I could tell.

What surprised me is just that, after reading the wikipedia entry, I realized that I do, most days, fit the definition of a para.

I had that moment too. With me, I mean, not with you.

Solidarity, sistah.

You are Haddayr to me. We talk to each other and I am glad to hear your voice. I'm glad to be your friend.

Weather ... I undertand about conditions. I know moods and go through usually three of them before finishing dressing in the morning. But beyond that -- you're Haddayr. I'm not some kind of phony, any fact about you, well it's a fact and when or if it comes up with us I'll try to do what looks to be called for. But your being who you are, is all of it for me. I realized with my closest friend, Michelle, who I wanted very much to marry, that my heart took over my eyes and ears and soul long ago and she is always just this light to me. I almost want to say something weird and totally insane like when we are fighting the light of who she is shines brighter and brighter and no matter what we are saying I love her sings through me and I love her all the more.

I'm not Pollyanna nuther and about it all, I guess like Jim Kirk said, "let me help," that's what stays.

As usual, you are refusing to be TeeVee disabled, and not being consistent, which is why you don't fit the categories. You're supposed to get polio or have a skiing or car accident and spend the rest of the movie in a wheelchair, teaching schoolchildren or fending off your crazy rat-cooking sister. But nooooo.

Using diagnostic categories for "level of function" seems strange, really. My sister is hemiplegic, but that doesn't tell you much about her level of function. PT-milestone type categories make more sense, like "walks unassisted: never/sometimes/always."

Anyway, as always, you rock.

Well, in defense of disaboom, after the list of "level of function" was an exhaustive list of conditions. I didn't have to click "paraplegic." But when I looked it up, I realized that the vast majority of the time I _do_ fit the definition.

But--

Labels are for pickle jars

As you know, I am going off to college in the fall. Because of my life-threatening food allergies and asthma, I need some different stuff, for example lots of special food. To get these from the college, I had to register with the Office of Disability Services.

Which was a very interesting perspective change because of course I am unable to eat certain things, be in certain environments, etc., but I had never thought of that as a disability before. In the strictest literal sense of the word's roots, I suppose that it is, but I'm still not sure what I think about the whole thing.

It's a shock, at first, isn't it?

Honestly, I'm not sure how I feel about it, either, or what I think of it, but as I need crutches and a wheelchair and I have a little tag with a dood on a wheelchair on it for my car, it's pretty funny that I was taken aback by the characterization.

In a very weird way, I almost envy you. Bear with me.

I am insanely grateful at how things have turned out in the past week. But I also know that I'm in for the injury version of telling people you're a writer. You know exactly what I mean: the immediate response that the other person makes about how they'd write a novel if they only had the time, or they ARE writing one, or whatever. And thus: "Oh, yeah, my back hurts sometimes." Fabulous.

I'm still pondering whether to try and get my doctor to sign a temporary handicapped parking permit application. Perhaps if you could get one for cholesterol... I wonder if the PT fits the list that can sign this: http://www.dps.state.ok.us/dls/pub/HPA.pdf

Oh, no I already get this.

"I know exactly how you feel; I get tired too, sometimes."

"Oh, yeah, I know what you mean. Sometimes I stumble when I'm tired, too."

NOT KIDDING

Oh -- I also got my doc to sign one no problem, just by seeing the way I moved.

I do want to acknowledge your moment of self revelation. That's huge.

At the same time I'm pissed off at disaboom. There's no box for me. There are several boxes left off. Like what about 'tremor'?

I always had this impression that disaboom was for super crips people who are "inspirational" for opening doors..literally.

Why are you on disaboom?

You don't act disaboom.

First of all, your response made me laugh and laugh.

Second, in their defense, underneath the "function" list they had a long list of conditions, including pain: specific places and just "pain" in general. They did not have tremor, which surprised me as this is often more disabling to me than any of my other symptoms, when I can't do stuff.

I a not sure why I'm on disaboom; I was looking for a place to blog about crip stuff and talk about crip stuff. I'm on a few LJ communities for this, but I was expanding.

I'll let you know if you're wrong about it, but I'm guessing you aren't.

I'm glad I made you laugh.

Please do let me know about disaboom. What other communities are you on that you find helpful?

I have found http://community.livejournal.com/dot_gimp_snark/ good for a laugh, as is no_pity.

I LOVE http://www.butyoudontlooksick.com/ I should actually see if they have a place for me to blog _there._

Thanks! The dot_gimp_snark post about the Alliance of People with disAbilities made me laugh and laugh.