Sometimes Disability Life Is A Little Sad....

 

Sort of a mixed message this week as I signed up for a workshop on “Illness in Fiction” in a few weeks (I’m still debating whether to get my money back, actually) but also a bit somber that I couldn’t share a meme that said “Our Disabled Lives Aren’t Sad.”

Because sometimes mine is, even though I wish it weren’t.

 Sometimes, it seems sadder than other peoples’ but maybe not as much as when I was younger and almost thought abled people doing abled things was some kind of magic I was feeling cut off from.

 (Spoiler alert: Sometimes the pretty girls had problems I couldn’t guess at by looking.  Life is not easy for anyone, all the time.)  Maybe if it said “Our Disabled Lives Aren’t ONLY Sad” I could participate a bit more—maybe I’m feeling like a uniter for getting a chance to annoy both the ableists and the hardcore disability-pride faction that are so defiant about never wanting to change a thing, being part of nature’s vast tapestry, blah, blah blah.  Like that’s such an answer when you get your heart crushed because of some thing that’s not your fault, one more way. Or when it feels like the answer for every one of your questions is “No”.  Or when you’re fourteen or so hearing that for the first time and you just wish Jeff liked you back and thinking “Fuck nature” is the first time it really wasn’t, like, the horrible F-word in your head, even if you don’t say it out loud for a few more years because you bought the “poverty of expression” hype far longer than any rational human should have, even after watching Eddie Murphy fucking paint with maledicta.

(Okay, it helped a little, the first few times, to know that other people shared some of these struggles, too, but it’s getting harder to stay excited about that in the absence of true solutions, much less that whole tween thing where you look at somebody in the next grade and buy a backpack that looks like hers because you can’t actually be her.)

Definitely not seeing many—can I be completely corny, and call them “roll models”—anymore, and I’m not being one either, trying to talk some…kind of anonymous macro into understanding why some disabled sadness makes sense, sometimes. Not being able to move around, just on its face, sucks hard sometimes. There are places I will never be, and, probably, people I haven’t met because this is true.  Maybe one of them was supposed to be my lobster, too.(Though I try to think otherwise, because what can I do about it?) And, yeah, it’s empowering to say “Maybe in a fully-accessible society…” but I’ve never seen one, and probably?  Neither have you. So you might as well call and get the weather report from Narnia while you are at it—not sure why I picked that—got two chapters into one of those books before I got bored, but maybe my friend Jacqueline would have liked that shoutout.

I get caught, as I often do, between “A Better World Is Possible”(this would be a lot less sad if societies would do better by us and stop making us sing for our suppers so much) and the more personal terrain of “Don’t Tell Me What Kind of Day To Have”—I think many Americans are still scared of our bad feelings and admitting that every piece of #persistence doesn’t lead to clear-cut success.

I’m not saying it’s great to be sad—I certainly feel that I’ve done my time and several other peoples’ on that front lately, but it is part of the deal of being a real human being that can, in theory, feel All The Things.

So, if you are, try to accept yourself. Hope for a better day, and stop worrying about some hypothetical abled eye, looking for bumper-sticker wisdom.

Dear Alice...#AliceIsLove

 

Dear Alice,
We are contemporaries, so you are not my ancestor. I’m a little older, in fact, starting on this crazy disability journey while you were just a determined gleam in someone’s eye. We talked online a few times but I’m never sure how much people remember about me when I do that.  It seems that possibly my name might not mean much, but that we’d have a reference in common and that you would say “Hey, how’s it going with (Vexing Disability Topic #12) that brought me into your feed, but, probably you’d remember it better than I am right now. What set you apart is that you would actually know *what* strand of bullshit an online acquaintance was actually trying to pull apart *right now* and it’s not fucking great;

(I wish I could have told you about that, too, but it’s too long a story to type for metaphor’s sake, though I am probably planning to post this. Suffice to say, from what I heard from your friends this morning, you probably would have been tickled about it.

Your feed gave me a glimpse of what disability community would feel like, and though it seems contrary to the spirit of today’s events, I’ll always be angry at Elon and, indeed, Nature Herself for taking that from me, since I have it so seldom, and in such tiny bites. My disability community fits together more like Italy, back when, or maybe even Yugoslavia, It makes me sad that I’ve never had an “Oh, my tribe at last,” crip story, but I’m too tired of trying to convince myself I have to try to make it sound  good for you, wherever you might be as  I write this, having cancelled my zoom registration to make room for your real friends instead of my fangirl-who-doesn’t-understand-the-assignment self.

 Maybe that’s why I like to hide behind characters when I write thoughts like this; I usually make them better and bolder than I am. They get to win and so far? I don’t. I get to live to tell the story, though, which, in deference to today’s occasion, I’m trying for the first time in ages to make a good thing instead of rather unfortunate—it would still be nice if the next chapter was a banger—either with or without(hopefully with!) an actual bang or two.  Right now, I don’t see anything…it reminds me of after college when I had “detail-oriented” on my resume and didn’t realize there was a typo in it—guess I can take “visionary” out of my bio, too, right?

I used to wonder if you had a secret, sometimes. Not that I pulled out the full-on “How does she do it?” trip on you like an old lady in a supermarket, but, sadly, thinking about you *has* made resenting those people just that little bit harder(which, okay, it’s always hard to give up the hobbies of a lifetime, but if I learn something, I’d survive.) Sometimes I thought it was as simple as “Greatest City” vs.  “Oh, I changed planes there once. Damn, it’s hot.” Or that I never got to be Erika in the way you got to be Alice—trust a writer to believe that bylines save past the point she should know otherwise, and, you know, I do have some clips.  But am I a phenom? Since I’m still Ms. Hannukah  a great deal of the time, I guess it’s safe to say “No,”, but if we arm-wrestled, I would absolutely win, which, given the competitive mess that is the United States, maybe ought to be more satisfying?
Still wish we could have been friends,

Erika J from Phoenix

 

WIP Wednesday...

 I think I still like the first version better, both because it just flowed out, and it was less ambivalent. But I did get some good feedback, and maybe I'm not the only one looking for a new beginning, here.

The part of me that looks for signs and omens think it must mean something that there is a Greek restaurant so close to our hotel. It’s not as fancy as our Occasion Place at home—call it El Greco or Malaka’s (Though, really, as I massage my run-over toe, I feel like the one jerkoff here) but it has jaunty blue-and-white tablecloths and smells like herbs and lamb. It feels like a good sign, especially for a trip that feels like such a compromise between “I” and “We”. Hopefully, Kevin will actually be as happy to see us as he was in his messages and it’s not just the comedy-troupe version of “We should get together real soon,” that nobody intends to agree to. The “Never on Sunday” music playing in the restaurant almost makes it feel like a real vacation, but my toe *really* hurts. I curse and rub it again before my girl comes back and catches me bent-over when she looks as fresh as a spring morning that, quite frankly, tries just a little too hard. (I help her do it—my first conspiracy.)

People usually smile when my girl and I step out together, as it were, both because she is getting more surfer-girl blonde by the instant, in addition to her being conventionally lovely (with a twist, as my acting teacher might say.) When they see me, what average people think they see is a conscientious older brother taking little sis out for a constitutional, or maybe, more likely, a stepbrother who has buried the hatchet., since we don’t really look alike. They love seeing me guide Corrine’s chair…up to the time that we might kiss and then their faces change in ways I try not to think about.