...nothing here is promised, not one day... Lin-Manuel Miranda

Crip Etiquette
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I know that many folks have issues with the entire concept of "political correctness" or, as Judy Small taught us years ago "ideologically sound" down under, but hey listen. It came out of a desire for all sorts of people to determine what they would be called. And a newish way of thinking. Part of "nothing about us, without us".

Political correctness has existed for centuries. It has changed the way people think, grump though they might, and it will contiue to change the way people think. if you think it's a tempest in a pod coffee machine, too bad. It really does matter. Okay?

When I first heard the term- pre-internet, pre-emoji, pre-ASCII, pre-air quotes (ok,maybe those were around) it was an immediate snarky hit in my crowd. Snarky, not seriously. But all around us were angry and annoyed people who rolled their eyes and complained that they keep changing things and I don't know what difference it makes and I'm too old to change my ways,ad nauseum. No one reading this dispute the importance of language, and labels and changing ways.

Soooo, three far too lengthy introductory paragraphs later, what's my point? It's this: PLEASE DO NOT EVER use the phrase "wheelchair bound" where I can hear you, or where I can read it. That crowd I talked about? It was mostly disabled people, the ones I worked with at an independent living program. WE could joke, WE could say what we wanted to within our safe place. We did too. But I came of disability age in a time where so much was changing. And we were changing the world, we hoped, with it. Starting with words. No one I ever worked with at CIL was wheelchair bound.

This morning, after weeks and weeks of waiting and not paying attention, the technician came out and put new batteries into my power wheelchair. I still don't understand the delay but am past caring. All that matters is that I can breathe. I can relax again. I do not have to debate every trip up the street, down the block, down the hall because the batteries were so moribund (thank you David Steinberg) that the power would drop from medium/okay to ACK/NO in seconds. Yes I have backup. Using the scooter,which is just off the rack, is not the same as my bespoke, custom-designed made for me power chair. This sucker makes me mobile. This chair means I can do and go and only bitch about the rain. I don't have to convince myself, as I have done often, in the last few weeks, that Ihad enough stuff in case there was a power failure. Or whatever.

Yes, I had the scooter. Yes,I have friends who live nearby or would-and have -driven from not-nearby to help me out. Not the point. NOT the same.

When Dan the tech guy called at 8:30 this morning, I was on the verge of tears, patting my chest and saying "oh!" a lot. I had not gotten an earlier call regarding an appointment. And often, my area of Seattle is where the tech service is planned for Thursday-the only day where I have something to do. Poor Dan. I asked if I could kiss him.

I got off the phone buoyant. I was so so so happy! I am woman, hear me squeak! Out of proportion thrilled. Why? Because dammit, I was no longer bound, housebound. I was no longer trapped. Even if I weren't planning to go out, I would be able to, comfortably. i am not, and have never been, wheelchair bound.

I am wheelchair unrestricted. And while I sure in hell don't speak for every user of a wheelchair, I would appreciate if you could think about it and redefine it as I have. Wheelchairs are freedom. And yeah, I knew I was a lttie dizzy about it because yeah, the image and song in my head became Richie Havens' Woodstock performance of "Freedom".

I will respect your words and terminology if you use the phrase. I will not and I will write essays like this to get attention to a small but mighty matter. I am not "special", "differently abled", "handicapped" or "physically challenged", but i am disabled. I am not a wheelchair person, nor wheelchair-bound, nor crippled. I am, for sure ,not your inspiration, oh please please. I use a wheelchair. I am a wheelchair user with a disability. Oh it matters so so so much.

And in a week where I once again received the message that people like me cause extra work, and cost extra money, I need to know that you get me.

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