My Whole Expanse I Cannot See…

I once wrote about how Florida Governor Jeb Bush and a bunch of legislators got together a bunch of years ago to legislate my independence, and the independence of other people with disabilities. I wrote about the importance of politics, how the people we elect really do write laws and policies that change peoples’ lives, for the better. I was writing from the perspective of life being made better, and being thankful, I wasn’t really thinking about how we could elect a bunch of people who would write new laws and new policies that turn everything around, that would make life out and out bad. I wasn’t REALLY thinking about that stuff, but now I think I should have been.

When Rick Scott and Alex Sink were running to be the Governor of Florida, I wasn’t really thinking about how the outcome of some election would change my life to where I can barely leave my house, to where I’m being driven to “medically necessary” appointments in ambulances. I knew that Alex Sink was kind of milk-toast, and that Rick Scott was a multi-millionaire right-wing Tea Party nut-bag whose health care company was fined billions of dollars for Medicare fraud. Scott got out before he could be criminally prosecuted, but the general consensus was (and is) that his resignation wasn’t just dumb luck. Sink ran on social issues and the fact that Rick Scott had absolutely zero political experience. Scott ran on jobs, budgets, numbers. His campaign slogan was “Let’s Get to Work.” Given Scott’s shady past and total lack of experience, I didn’t put much thought into the election, though I definitely didn’t see Alex Sink losing. Even if she did lose, so what? I mean, what could Rick Scott do that could affect me? Little tiny, nobody me?

Well, Alex Sink lost, Rick Scott won, and as it turns out, a Republican Governor matched with a Republican Legislature can affect little me, and lots of other people. He slashed education funding, he almost made it so folks employed by the Government could be drug tested for absolutely no reason, he refuses to implement the Affordable Care Act, he slashed Medicaid funding. He took away the funding that allowed people with disabilities levels of independence, allowed them to be productive members of society, contributors to the economy. So, all that stuff I didn’t think about happened, and now I think about that stuff every single day.

Rick Scott has one of the lowest approval ratings in the nation, people here hate him. He won the election, but only because just a fraction of the population actually voted. Most of the people who hate him now didn’t vote for him, they didn’t vote at all. Unemployment is down in Florida since Scott was elected in 2010, from 10.2% to 8.4%, but National Unemployment is down too. So, our economic improvement could easily be a sign of our overall economic recovery, and not necessarily Scott’s business acumen.  He guaranteed 700,000 jobs in 7 years, a figure we absolutely will not meet. Mostly he just pisses people off, destroys the work of his predecessors. Former Republican Governor Jeb Bush got disabled people out of hospitals and institutions, Rick Scott is putting us back. Why? Because it’s good for business, Rick Scott’s former business.

Mitt Romney’s a businessman too, he’s promising tons of jobs. He’s good with numbers and profits, but we have to consider that many of his business decisions have made him and his partners astonishingly wealthy, while putting other people out of business. He has greatly helped himself by hurting others. That’s business, business is cold. Some people have to lose so others can win. People who go into business know this up-front, they know that to get ahead, some people have to get left behind. That’s business. The thing is, Government isn’t a business, being President isn’t like being CEO of the country. The Government exists to protect its citizens, every single citizen. A president can’t, or at least shouldn’t, make ice cold, by the numbers, decisions. Being President involves making decisions that can’t hurt anybody, no matter how many other people that decision might help.

When I look at President Barack Obama, I see a man who has worked his way up from absolutely nothing. He grew up like most of the citizens he now governs, single-parent family, worked his way through school, buried under student loans, with goals and ambitions focused on helping other people to have lives easier than his. He met a nice girl, courted her, driving around Chicago in his shitty, rusted out car. Has two kids, girls who haven’t had automatic perfect Christmases, whose parents had to work to get presents under that tree. I see a man who has gone gray worrying about the citizens of this country, worrying over every choice he makes because he doesn’t want to make a choice that makes life worse for people after he makes it. He worries about the men and women he sends into war, worries about getting them home safely. He feels responsible for their care when they’re injured, and even more responsible when they’re killed. He’s just a normal, honest guy, who signed up for a shit-job with more responsibility and consequences than it has benefits. He has dedicated his entire life to public services, not personal gain. When I look at President Barack Obama I see a smart man, a kind man.

When I look at Mitt Romney, I kind of see Rick Scott. I see a guy who could hurt people and not think twice about it, so long as it makes “good business sense.” I’m not going to be politically correct here, “I’m sure Mitt Romney’s a good person” and all that bullshit. I don’t see a good person when I look at Mitt Romney. When I look at Mitt Romney I see a guy who has made his fortune by cutting other peoples’ throats. He looks out for his family, his friends, himself. He does good things because you’re “supposed to,” all very public, very grand. He’s not a good person at night, in the dark, when nobody but God is watching. I just don’t see good in him. I see a guy who, if elected, could hurt me. I think about all that stuff I didn’t used to think about, back before we elected a “businessman” to be the Governor of Florida.

Tomorrow, when you vote, think about these things.

So, something about Governor Romney that makes me mind-numbingly angry is his assertion that State Government needs less, and in many cases, no Federal oversight. The idea makes me upset to the point of desiring violence against the proponents of said idea.

If States are so great, why did the Federal Government have to end slavery?

If States are so great, why did the Federal Government have to end segregation?

If States are so great, why did the Federal Government have to ensure the disabled access to Public Education?

The Federal Government exists to hold States to a standard, to a level of protection for all Americans. History shows us exactly how necessary Federal intervention is, because States have literally hurt people when left to their own devices. This is just fact, it’s like knowing that the sky is blue.

The thought of leaving Medicaid to the hands of each state is especially upsetting. Florida is a prime example of why Medicaid needs more Federal oversight, not less, let alone none. For some reason, we elected a criminal to be our Governor. Rick Scott made his fortune defrauding the Health Care System, resigning as CEO of his health care company before he could be held legally responsible for anything. Well, he, being of such astonishingly high moral caliber, has decimated Medicaid funding for programs that allow disabled people to live in their communities independently, happily. I got cut by 70%, had to say good-bye to my personal assistants, and thus, my entire life. Good-bye. coffee-shop. Good-bye, movie theaters. Good-bye, girlfriend. Good-bye, favorite bar. Good-bye, everything. According to the new rules, “it’s the responsibility of” my “family to provide access to the community out of love and concern for” my “well-being.” So, I’m supposed to go to the bar with my mom. Oh, wait, my case manager e-mailed to suggest, “your brother can come and you can have a nice Sunday afternoon out on the porch.” My mom isn’t young anymore. My brother’s married, works a crazy busy office job. Now, they’re doing my care 24/7, which is really 85% my mom. We get no help. Oh, wait, the State is lately spending two-ish THOUSAND dollars a week on an ambulance service to whisk me away to “medically necessary appointments.” They strap me to a gurney like Doctor Lecter, it’s great. I used to employe college kids who NEEDED my pay, now the State pays ambulances roughly $700 PER MEDICAL APPOINTMENT, whereas an assistant would get $45 for a three hour appointment. They’re not saving money by cutting my services, they’re just funneling it and a lot more toward the medical industry. Their goal is to have me, and people like me living in hospitals and institutions. It costs more up front, but the gamble is that we die way quicker, and folks like Rick Scott make a sweet cut somewhere along the way. If Scott had full control over Medicaid thanks to Romney… I don’t even want to write the words.

I WANT intelligent, moral, kind people like President Obama to be able to see State-level corruption, and have the power to fix it. I wish he could see me, how I employed people, college kids, how I was contributing to my local economy, how I lived a normal little life. Now, it’s all gone, and for what?

I definitely wouldn’t call myself a sports “fan.” I can talk sports, I know who won what championship every year, I know the rules of the games, but I don’t regularly watch any of said games. I’d probably call myself a sports “follower,” I know what’s what. However, every two years, I watch sports for two weeks solid. The Summer Olympics, the Winter Olympics, I’m down. I’m there for swimming in the Summer, downhill skiing in the Winter. I even watch, maybe especially watch, the obscure sports, like table-tennis, curling, fencing.

I think what I find so compelling about the Olympics is the intensity, the real gravity of what it is to win or lose. Most of these athletes don’t have major sponsorships, no million dollar shoe deals. Most Olympic athletes are simply totally dedicated to being the best at what they do, the world’s best ski-jumper, best skeet-shooter, best fencer. They dedicate everything to their craft, everything to one moment to prove that they really are the top of their game. Many train four years for a jump or a swim that’s over in under one minute. If that one minute goes badly, it’s another four years of sweat and bruises if they want to try again. People who win look over the noon, people who lose look crushed, completely broken.

I’ve mentioned fencing a few times because of a match I watched yesterday. A Lam Shin, from Korea, disputed whether or not her opponent’s final blow counted because of an inaccuracy in the match’s time-keeping. In short, she thought the clock should have run out before her opponent stabbed her in the face (guard). So, her coach filed a formal complaint, and she sat. Her opponent left, A Lam Shin sat, and paced, and wept. She did this for almost an hour total, until officials had to physically, gingerly, lead her away. Leaving means acknowledging the judges’ decision, which she definitely did not. She fought with everything she had because she couldn’t simply allow four years of work and sacrifice to come to nothing because a clock got its math wrong.

The judges ultimately sided with the busted clock, A Lam Shin has another four years of training ahead of her, if she’s able to make the investment again. She lost, it hurt. This is why to a non-sports fan the Olympics are so completely compelling.

I wasn’t going to write anything, I didn’t think The Dark Knight Rises is even worth slamming, but tv changed my mind.

In an ad for The Dark Knight Rises (Rises for short), apparently some reviewer called it “one of the best films ever made.” Yes, I’m certain that every thirty-four year-old living in his mom’s basement thought it was fucking epic, but putting it up there with Cool Hand Luke, Casablanca, Doubt, even The Dark Knight, is a complete, astonishing joke. Rises is, at least in my head, one of the most boring movies ever made. At almost three hours long, it really felt like seven. The action sequences were flat, complete with contrived jumps for sport-bikes. The villain, Bane, was dry and absolutely pointless. I can’t say enough to fully capture how painfully bad The Dark Knight Rises is, I couldn’t wait to leave the theater.

So, with my face and other issues, I haven’t been reading like usual. I just haven’t had my focus. I’ve decided to really force myself.

Right now, I’m reading The Weird: A Compendium of Strange and Dark Stories, a comprehensive collection of weird fiction gathered by Ann and Jeff VanderMeer. It’s not a tiny book, it’s thick enough to use as a weapon. It has stories by Borges, Bradbury, Lovecraft, all the greats you know, and have yet to know. I’m a third through, so a full-review is forthcoming. However, if you don’t need a ton of convincing, just go ahead and buy it. It’s definitely worth the cash.

So, first off, I’m a… persistent person. Or stubborn. Or persistent. Or persistently stubborn. The point is, once I get something in my head, I don’t just let it go. I lost a BUNCH of movies, it was my fault. I deleted them, stupidly. I was able to convince Apple to let me re-download the 300ish that weren’t in the Cloud, but some, too many, just aren’t available anymore. Apple can’t restore movies they stopped selling. Everything in my last post, no longer available. It was upsetting, at least to me. They were mine, my movies. I collected them, moved them from hard drive to hard drive. I watched a few of them alone, in the ICU way back when, after the pineapple juice that killed me but didn’t. I watched some crazy and happy in love. A few, I hadn’t even watched yet. Harvey, May, they really upset me. I’ve seen them so many times. I have essays in my head, unwritten of yet, about Harvey and May. Predators, okay, nobody liked Predators, but for some reason, I’m not in that nobody category. I think it’s a blast. It’s fun, and Adrian Brody quotes Hemingway! How can you go wrong with fun and Hemingway quotes? You can’t! I didn’t want to lose these movies, my library forever incomplete. I want to thank everyone who offered to send me DVDs, it was very nice. Unfortunately, I’m weird, and a snob. DVD rips just aren’t the same, and that wouldn’t fix the HD issue. Besides, even with DVD rips, or even if people had sent me actual iTunes files and I SOMEHOW broke the DRM (which was REALLY unlikely), those movies wouldn’t have been MY movies, the files I collected and stupidly deleted. Like I said, I’m weird.

At any rate, these missing movies were a real problem for me. I was so mad at myself. I know they’re just digital files, but the sense of loss, and that it was my fault… I was just really upset. I don’t expect anyone to understand. Everyone here thought I was crazy. I just couldn’t let them go. I didn’t let them go. I won’t get all boring and technical, and talk about how you can’t use data recovery software on wirelessly mounted network drives and how I got around that issue, I’ll just say that, I did. After over 90 hours and three different data recovery software packages, my movies are back, safe and sound. Persistence paid off.

In other news, speaking of the ICU, I just spent a week in there. It was was a really bad, possibly the worst hospital experience I’ve ever had. I’m done writing anymore about it, just thinking about it still bothers me. I’m out, that’s that.

So, yesterday I was sick, a really unpleasant kind of sick, and while I was sick I just turned off my brain and started watching this spectacularly train-wrecky show, Sister Wives, it’s about this polygamist fellow and his four wives. The show’s bizarre on lots of levels, but this one thing immediately jumped out at me. In order to justify his skeezy lifestyle, the fellow says, “Love should be multiplied, not divided.” Love should be multiplied, not divided. He says it so philosophically, like he’s fuckin’ Plato. He talks like he’s cutting edge, state of the art. I’m not particularly good at math, but I know idiot math when I see it. His little polygamist formula accomplishes exactly the opposite of its supposed intent. He’s multiplying his number of wives, but dividing his time, and his love, between his gaggle of women. He sleeps in a different bedroom every night, they go on separate dates, he’s spreading his love thin, he’s not multiplying anything but his sleeping arrangements.

When you love a woman you should love her, and only her, honestly, and completely, and always. Love is real when you’re with someone and the rest of the world goes away. You look in her eyes and everything around you gets soft, muted, all you see is her. All you feel is how much you love her. You look in her eyes and you’re not worried about schedules, money, the tedium of the day. You’re not scared of dying, where you might go after you die. All you see is her, you don’t want to be anywhere else, with anyone else, ever. She’s more intoxicating than any liquor, any drug. She’s your everything. That’s love, and you know it when you feel it.

Polygamy’s something, but that something isn’t love. Not really.

I’ve been thinking about this post a lot, it’s just hard to know what to say. I mean, writing about Steve Jobs in the past-tense is something I never expected to do, not ever. He was supposed to outlive me by decades, but now he’s gone and I’m just kind of at a loss for the right words.

I think Steve was so successful because he never set out to sell computers or digital music players or smart-phones, he was selling people a new reality, a reality in which technology would make life better. People wanted ways to organize their photos, listen to their favorite songs while taking the train to work, so he gave us the technology to make those things possible. Steve saw the little facets of life that were kind of annoying, like cluttered disks full of digital pictures, that giant CD collection that kept its own collection of dust, so he gave us the Mac and iPhoto to keep our memories organized and safe, iTunes and the iPod so we could ditch those dusty stacks of CDs, then the iPhone so we could easily stay connected to the people and things we care about, any time, any place. When he introduced a piece of hardware or software, he didn’t just rattle off feature-sets, he talked about what this shiny new whatever could DO to make your life a little bit better, to make tedious things not tedious anymore, and he always did so with intense sincerity and passion. He honestly believed in whatever new reality he was trying to sell, which convinced us to go spend some money to give that reality a whirl, and sure enough, Steve would be right. That device or software we bought did make life better, easier, more fun. I went to a bunch of Steve’s keynotes, I was there when he introduced iTunes, iPhoto, various colors and shapes of iMacs, nobody ever left bored, skeptical, we all wanted the “it” we just saw. We wanted it because Steve just seemed so completely and honestly certain that “it” would make our little pieces of the planet better. I get the same vibe watching Steve on-stage that I get from Kurt Cobain, they were both artists, and whatever they gave us on-stage was always so absolutely fucking honest, and they both changed the world, definitely changed my world, with that honesty. Perfect raw honesty is always beautiful, people want to be a part of it.

To me, Steve wasn’t just the CEO of some giant faceless technology company, he was someone I knew, someone I’d talked to back when I could talk. I interviewed him about Mac games back when I wrote about Mac games, the first and only interview he ever gave to a Mac games site. I was just a twenty-two year-old nobody, but he took the time to talk to me, to answer my five questions. A few years later, I was supposed to give the keynote at this big assistive technology conference and receive some kind of award, so I e-mailed Steve and said that I wanted to give that keynote on the best MacBook Pro available, to show people how far a Mac and assistive technology could go. Two days later, I had that MacBook Pro. I happened to choke on some pineapple juice a few weeks after I got that computer, and a few days before the conference, so I didn’t get to use it for half of the cool stuff I promised. I mostly used that computer for survival, two months in the hospital, those months at home figuring out how to be okay without being able to talk. I don’t think Steve regretted sending it, I was still pushing assistive technology to the bleeding edge, just in a more private way, with lots of drugs and liquor because my girlfriend left me. Steve sent a nice “You’re welcome” in reply to my explanation and “Thank you.” I think Steve liked assistive technology because, I think in his eyes, assistive technology shows the Mac, and now iOS devices as well, doing what he truly meant for them to do, but one step further. Apple devices and assistive technology don’t just make people’s lives better, they make people’s lives possible. There’s a difference between existing and living, for people with disabilities assistive technology is much of that difference, and I think Steve understood that fact. I think that’s why he talked to me that first time, why he sent me that MacBook Pro, why even when Apple was drowning in red ink and Steve was cutting departments and programs like crazy, he never cut Apple’s assistive technology efforts. Instead, assistive technology has expanded over the years at Apple. Apple makes sure that assistive technology developers get the support they need so their products don’t just work on Apple devices, they shine. My assistive technology doesn’t break every time OS X gets updated, because Apple supports its assistive technology developers, because Steve Jobs wanted assistive technology on the platform he created to make people’s lives better.

Steve Jobs really did change the world, he made life better, easier, more fun, and for some people, he made life possible. I met the woman I love, the other piece of the puzzle that is me, because of Steve’s technology. I wanted to send him an e-mail showing him some projects I’ve finally finished, but mostly, I really just wanted to tell him how the Mac has affected my life since I quit talking, how I met someone I want to be with for my ever because iChat let me say, “Hi!” I wanted to say thanks, I’ll always be sad somewhere in my head that I didn’t. Maybe he knows all this, has a better view of things from where he is right now. Maybe I’ll get to talk to him again somewhere else. I don’t know, I guess I’ll find out eventually, maybe.

The line from this song that I can’t get out of my head, I don’t know what to do with your clothes or your letters that’ll make a whisper out of you…

I don’t know either. You can get rid of all the things that someone leaves when they leave you, but they’re still so right these, always there. You see them every time you close your eyes.

At least it’s a pretty song.