Unless you have been living under a rock, you probably know about the Affordable Care Act (otherwise known as Obamacare). In very basic terms, it should provide health insurance for all Americans, regardless of any pre-existing conditions.
Before anybody jumps down my throat, yes, I said “should.” Because all rules have their exceptions, and I am very much used to being that exception. Yes, I know about all the talking points, and the projections, and the memes (hey, I do spend way too much time on Facebook). And if one takes them at face value, it looks to be a good deal for everyone.
Aside from the fact that I take very little at face value, I do so even less when it comes to health care. In short, I will believe it works when it works for me. Will I still be able to get the brand-name drug because the off-label one (to which my insurance company keeps trying to switch me) no longer works for me? Will I still be able to see my current primary care doctor with whom I have an established relationship?
This is the life of being the canary in the coalmine. If I can get ACA to work for me, odds are it will work just fine for most everyone else. The problem with that, of course, is that I end up as the experimental guinea pig for stress-testing the system: “Let’s see whether or not she breaks it!”
Here’s the truth of it — nobody knows for certain whether or not ACA will work as advertised in those endless talking points, graphics, and memes. And attempting to reassure me by waving them about as “proof” that I have nothing to worry about is just likely to make me feel even more like that canary that everybody side-eyes, waiting for it to keel over.
Do I want ACA to work for me? Of course. Do I trust it to? Not yet. And that’s all I have to tell you from the coalmines.
Goodness knows I’ve had some…interesting…responses to my disability. I’ve been thrown off an airplane, mocked by a middle-aged transvestite, and had an entire ER rig called out on my behalf. Today, however, may have been the first instance of Serious Oversharing in response to my disability.
I stopped at a local diner for lunch today. As I was standing there waiting for the waitress, a guy at one of the booths asked me if I had recently been to Thailand.
Me: (blink) Uhhhh…no
Guy (almost boasting): Yeah, I got a rash like that after my trip to Thailand. Probably one of the hookers!
Me: (blink) Uhhhh…no.
He then turned back to his dining companions and continued his conversation about the chances for That Sports Team in an upcoming matchup against That Other Sports Team. Matter-of-fact as you please, as if he had just not announced to an entire restaurant full of people that he caught the cooties as a result of a hooker tour of Thailand.
Now after I recovered from the initial TMI Bonding Moment, several thoughts ran through my brain:
- Wow, if I had enough spare money to take a trip to Thailand, I think I’d want more than just a brothel-stop tour.
- Was he asking ME if I’d caught the cooties from a Thai hooker?
- Was that his girlfriend/wife sitting next to him?
Now perhaps he was just having what he thought was a laugh with me. So…scratch the first thought off the list. That STILL leaves me pondering thoughts #2 and #3.
So my hat off to you, sir, for providing a most…unique…bonding experience. And of course, because I am a geek at heart, this entire thought process had its very own soundtrack:
I love dressing up in costumes. Really, I do. If I am done up in my tribal bellydance or cosplay gear, I am the Pretty Dancing Girl. Not the Girl with the Visible Disability. It’s my way of fighting to be noticed for what I want people to see — my swirly skirt, floofy bustle, or pony falls (my costuming Achilles heels, ghods help me) — rather than what I don’t want them to see.
Recently, somebody linked to this picture of a fellow cosplayer. In case you don’t recognize the character, that is Cherry Darling from the Robert Rodriguez grindhouse film, Planet Terror. During the course of the film, Cherry loses her leg and it is replaced with a machine gun (hey, it’s a Rodriguez film — you were expecting reality?)
But let us get back to the story of the young woman cosplaying this character. Her name is Lacey Henderson, and she is a model. And yes, she lost her leg to cancer at age 10. However, that did not stop her from being selected to cosplay Cherry Darling at the 2007 San Diegon Comic-Con (the mecca for All the Geeky Things) on behalf of the Weinstein Company’s release of Planet Terror on DVD. She posed for pictures and answered fan questions for the run of the convention.
Some people might call it tokenism, or objectification of her disability. I call it otherwise. I see her as an inspiration to those of us with visible disabilities who want to be noticed for something more than just our disability.Truthfully, I’m glad the Weinstein Company decided to consider hiring an amputee rather than trying to work with a model who did not have a disability.
There are some web sites out there that tell you how to do this cosplay “and still keep both your legs!” I find this to be more than a little squoodgy, because the message is that yes, you normals can have fun playing crip dress up! And at the end of it, you still have both your legs! And I think that dilutes the message Henderson is trying to send.
But I cannot help but feel that maybe if she can do it, so can I. We are each in our own ways, reminding people to see us as more than just our disability.
(I hope you will forgive me this. I am not generally in the habit of writing letters to dead people. It feels just a bit awkward inside my head. But I need to tell you this, more for my sake than yours, I think.)
You probably don’t remember me. It was at a competition for student films. I was covering the event for my school newspaper. At one point, you rushed past me, almost knocking me over, and made a rather irritated noise at the shy college student who was preventing you from getting from A to B as quickly as possible. In that moment, I filed you away under “pompous self-important jackass” and went on with my life.
It is perhaps one of my shortcomings that I rarely revisit an initial negative impression I get of somebody. It takes something truly spectacular for me to change my mind in that regard. In your case, Mr. Ebert, the spectacular happened. You wrote an article about your medical condition and how you refused to hide yourself away just to make other people more comfortable.
I read that article. And it inspired me. It told me I was not alone in this whole visible disability thing. That somebody else understood. That I did not have to take shit from anybody just to make them feel better. But more than that, it told me that I was more than just my disability. You never backed down. You never gave up. You never quit. You just kept on doing what you loved — writing about your passion for films.
My one regret is that I had not the courage to tell you this before your death. In some ways, for as far as I have come in my life, that shy college student still remains. But I can say that were it not for you, I might not have worked up the courage to start this blog. To talk about my journey, just as you talked about yours.
May I be half as eloquent, passionate, and graceful as you.
May you be blessed and free from pain now, Mr. Ebert. And yes, I will save the aisle seat for you.
Those of you who know me from elsewhere may have heard me say this, particularly when I am having a difficult pain day. It is actually a shorthand for my metaphysical philosophy.
Life is nothing more than a series of rooms. What gives our lives form, function, and meaning is who is living in the room with us on any given day. One room. One day.
It is a reminder to me to live in that day. Not the next room over, or the one down the hall. That room on that day. And then the next room on the next day, and so on.
Because I do take these things seriously, I am planning that my next tattoo will be the phrase “One room. One day.” So that I always remember that today is just that one day. And tomorrow? Well, who knows?
I’ve undergone a mess of pretty damned unpleasant medical procedures over the years, ranging from UV light treatment, to an internal biopsy, to cortisone injections. None of them are experiences I care to repeat.
However, this past week may well have been the most unpleasant yet. In an effort to determine if my chronic leg pain was due to nerve issues, I underwent a nerve conduction test. Yes, you read that correctly. I got electrocuted in the name of science.
Being somewhat apprehensive about the test, I did what most everyone else does these days — I asked the Internet. It responded in various ways, ranging from “not much worse than acupuncture” to “OMG, I was crying by the end of it.” Needless to say, the Internet was rather anti-helpful in this regard.
As it was, the test hurt quite a deal more than acupuncture. It even hurt more than when I got my tattoo. But I did not cuss a blue streak at the doctor, which is my first instinctive reaction to pain. Although Mythbusters says that swearing does help raise pain tolerance.
However, I was certain that I would get some sort of results out of this. Why else would I have done it? Certainly not for fun. But no, apparently my nerves work just fine.
On the one hand, I am relieved. Yet on the other, I cannot help but think that I went through all that pain, but with no gain in terms of getting any closer to an answer (let alone a cure) for my pain.
At the least, I now have a scientifically proven excuse for swearing at any more doctors who subject me to painful testing.
Perhaps the pharma companies could look into this? Just think of the profit they could make. Not to mention how fabulous we would all be!