Grr Argh Beep

The Fuck-all Solution

Before the ifs and buts, I have been using this company for seventeen years; giving them the benefit of the doubt would be a mistake. Also, this is going to be a stream of consciousness, so don’t get too mad at the composition.

They are a nonprofit charity, and in order to keep being funded a certain amount, they have to have a certain criteria fulfilled. This agency is paid rather well by the government, but you wouldn’t think so with the corners they cut. But I digress. For the past four or five years, due to the sluggish economy, their budget has lessened on average. In order to get their budget back, they added a few more houses under their supervision, which is fodder for getting the government’s money. It didn’t work.

They found themselves with more houses and less money. Instead of downsizing the number of houses they have, which would lead to quality over quantity, they cut overtime, fired a bunch of people, and gave regular old personal assistants double duty as supervisors. They even bought a new office building a few years ago, one that I call the Overlook Hotel given its amount of empty rooms…across the parking lot. Again, I don’t think it was to save on rent, but you’re free to trust those idiots I guess.

This company has a very high turnover, something that is, gasp, very expensive, and they have this high turnover because of how terribly run they are. People leave, they don’t really give a crap who they hire, and it’s extremely easy to be fired. Instead of cultivating a quality organization that attracts good people, which keeps them around longer, they just take responsibility for more cripples while letting the structure around them fall to pieces. By the way, when the company started, they required staff to have some sort of degree. Now all you need is a GED and a song.

In addition, they can afford to train new people with me for only four hours. Four hours. I need at least two full weeks to be comfortable enough; it’s never been a problem before. Tomorrow, another person is being trained for Mondays, despite already having three other people trained for the same spot. Monday has a different supervisor than Tuesday through Friday, but the supervisor responsible for Mondays is leaving training up to the other supervisor, who is also staff. Do you have a headache yet? You’d figure somebody overseeing my house would come visit occasionally and see how things are going. You’d figure he’d know enough to train people here, despite knowing me for years.

You would be dead wrong.

You’d also be dead wrong if you thought they’d warn staff and clients about major changes coming up, but it seems like nobody on any level has any idea what exactly the plans are. They make staff basically interchangeable, smugly rationalizing that anybody with any disability would have no comprehension of that, and thus not care. On Friday, they threw a picnic. That’s right; the supposedly cash-strapped company made room for an unnecessary picnic, and made staff attendance mandatory, giving them no overtime or option. My staff had things to do that night.

I’m going to get a little speculative here, but going by my own experience and things I’ve heard over the years, all of this is your typical exploitative management story, where the wolves running the henhouse give themselves bigger salaries and cloister around one another, convincing themselves they are doing a good job when they clearly aren’t, not caring that the people who should matter the most are being neglected. This is typical. This is how society decides to take care of the cripple problem.

To hell with it. I’m going to name drop.

http://ccliving.org/

Enjoy their garish website!

‘Why so smartious?’ update

The person mentioned in the original didn’t intend to upset me and knew my disorder was physical, so points to them. The thrust of my post stills stands however.

Beyond the threshold

The exact period escapes me, but I was around ten years of age when I took my final steps, without the assistance of leg braces or crutches. Even though my muscular decline has always been gradual, sometimes I experience a dramatic exposition of the limits of my body. This specific one is always just below my conscious awareness, it being such a shift in the way I saw my body that it will never dull.

I had woken up in the middle of the night with a full bladder. I slowly sat myself up, slid my legs over the side of the bed, grabbed my dresser, and pushed my body off the mattress. For some time until then, as long as I could grab onto something, I could walk. A few steps later, the muscles in one of my legs gave out and I collapsed to the floor. I was too full of adrenaline to do anything but attempt to get back up. I scooted toward the dresser and tried to work my way up, but my leg wasn’t having it. I sat down in the middle my room and started screaming and crying. I knew my days of walking were over. My mother eventually came into my room and got me to the toilet.

It is very true that you’ll probably adapt to your new limitations. Given the current state of my body, having what I had at the time of my last steps seems wonderful. But I can’t ignore that. I think about it every time I see somebody walking like it’s nothing. I think about it every morning during my hour-long preparation. One can deal, but never fully escape.

Why so smartious?

Last Friday, because of some scheduling mishaps, I had someone take care of me that I had met only the day before, including with my supervisor friend basic training and lunch at a sushi bar. At my desk, I saw my cat outside the window sitting near the door, which is her way of signaling that she wants in. I asked my assistant to get the door. After Lana ran inside, my assistant said ‘You’re so smart! You heard the cat.’

I’ve learned through experience that when you’re disabled and people compliment your smarts over the easiest things imaginable, like, I don’t know, seeing or hearing (unless you’re visually or aurally impaired), they generally think you’re intellectually disabled. There’s nothing wrong with being intellectually disabled in the least. What is wrong is assuming that the default disabled person is probably intellectually disabled.

It takes a profound amount of ignorance to be able to do that, intent be damned, especially after an entire day of interaction. I have an enormous book of medical records at my house; it’s irresponsible that people don’t bother to take a few seconds to see what my specific problem is. When I talked to a regular aide of mine, she told me that the agency pushes them to speak to many of the intellectually disabled clients that way, adding justification to my feelings.

I’m past overt anger regarding this, but said person has a lot of work ahead of them if they want to avoid making these gaffes commonplace; it’s a fundamental issue.

No BA for you

I haven’t written anything in a while because my energy has been focused on other things, namely trying to go to college, applying and studying a few textbooks to hone my discipline. This was my third try. I was rejected. It seems that the school I applied to, one that had accepted me about five years ago and had to opt out of due to financial constraints, upped their standards or just didn’t accept me or whatever. If you’re wondering why I have not tried other colleges, no others are as close with as great a value for the price. I want to enjoy doing hard work, not busywork at a crappy community college.

I have been lonely and bored for years. I sit at home, closed off from the world. Going to college was not only a way to challenge my intellect but to actually make in-person friends. Now it’s gone. It’s true that people are really good at adapting to adversity, and I’m no exception, but I’m not happy. Forget the illness. I just want to live a life. It’s a normal want. I don’t know where I could possibly go from here.

Defending the ‘T’ in LGBTQ

This isn’t particularly about disability and I’m not transgender, but that’s fine; it feels relevant.

Think of your genitals. No, I mean it. Consider them for a second. How much do they factor into your identity?

Don’t just gloss over this question. You’ll be surprised.

We focus a lot on that particular aspect of our bodies, for good or ill. If you are still wondering where I’m going with this, imagine you wake up tomorrow and your genitals are gone or they are mangled or they are healthy but look quite bizarre. How would you act? How would you present yourself to things you fancy? How would you go about your day interacting with other individuals of whom you used to share genitalia with?

If you catch yourself wondering why you care so much, think on that for a second.

Biology does not exist in a vacuum. Your brain gives you that feeling of connection to your body, known as proprioception. You have various body structures that affect the flow of your life and that flow feels intimately connected to those body structures. There is nothing inherently wrong with that; it’s ingrained into us. That’s why we can’t imagine losing a hand or letting some illness get so bad that we will no longer look like we used to. Now imagine that your flow feels wrong. Imagine that instead of the genitalia you were born with, your flow relates more to another type.

As I said, biology does not exist in a vacuum. Many of the things you value are valued in a certain way in light of the environments you grow up in. Your personal relationship with your body is shaped not only by yourself but in the company of others. Your frontal lobes are primarily for processing social interaction and gives us our ability to be empathic, to come to see the world through other people’s eyes. Much of who you are is other people. It is beyond reasonable to expect that certain people need to change what they are physically to be in line with how they see themselves.

Before you deride the ‘T’ as some sort of ultra-conformity, frame it as more of taking charge of what you value. In fact, not every trans woman acts like a typical woman and vice versa. It’s a disgusting stereotype that trans folk are just really, really gay. I’ll disprove that right now: the existence of androphilic trans men and gynephilic trans women. If you’re losing track of these definitions, let me Google that for you, or you could factor in the adjectives. I feel it’s important to repeat this: you have a relationship with your body in a profound sense and much of what you are is out there in the environmental ether. Think of what your family means to you. I’m willing to wager that if they were gone, you would lose an enormous part of who you are.

People are stuck on essentialism, that ‘required’ state of being you must adhere to in order to be considered a part of that type, a hubristic ancient bias if ever there was one. Unless it’s math. Kinda. Ask anyone: your neighborhood friendly, open-minded person or your neighborhood bigot, and they will go right for karyotype, or the chromosome types, to define what a man and woman are.

For the first few weeks of gestation, every human is sexless, though a sort of proto-woman. It is only when the Y, a measly little bit of genetic code, is activated, differentiation occurs. It’s the same tissue, only presented a certain way because of different levels of hormones. If you are familiar with the literature, it’s unclear how much these hormones affect personality, mostly due to poor statistics or shoddy methodology. To the extent that it might affect your personality, that would not essentially define who you are. A ‘feminine’ man would still be able to identify himself as a man, and vice versa. It is telling, however, how much the definitions of masculine and feminine change, even during our lifetimes, like the rise of professional women mathematicians. Math again. Sorry, the logical notation textbook I’m working through has infected my blood.

If all that we are is within nature, that our brains are not wholly ours, that we are to a major extent the people around us and the forms our bodies take, that more than 90% of our brain functions are unconscious, that man and woman are a summation of parts, try to tell me that an insignificant amount of genetic code that shifts a few bits around is what decides our sex. Transgender individuals who opt for surgery, which is something most transgendered individuals don’t do, are only really shifting hormone levels and putting bits in other places, bits that are made of the same tissue in all sexes.

If that renders somebody’s sex obsolete, then maybe medications and vaccinations and different diets and grandma’s new hip render your health and immune systems obsolete, or a liver transplanted into you is not your liver and never will be, despite the fact that that same liver will be replaced entirely by your own body in about seven years. The world does not work like that. Physiology is messy. Definitions are not absolutes. Transgender individuals are not imposters. They are what we all are, only not entirely satisfied with certain results.

Do the world a favor and can essentialism. Once you do that, you might get a clearer view of the complexity that is actually behind not only our social labels, but our biological.

Atheist cripple? U mad bro?

Hypothetical question: is your atheism directly related to anger over your illness?

Definite answer: nope. If it were, holy logic fail, Batman! Why?

A hypothetical god thingy might not necessarily be a pleasant vague concept. If said NNPVCHGT were an asshole, one needn’t worship it, but that would still imply its existence. I loathe Jeff Dunham, but, as much as I’d like otherwise, he’s real. Sigh.

Tap that joystick

I got the idea of this post from a close friend after asking for topic suggestions. It’s a silly habit to only work when you’re inspired, so here you go.

She suggested I discuss male sexual urges in an incapacitated body. There’s frank sexual discussion below the cut, so use discretion.

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I don’t want your damn lemons!

One of the casualties of my weakening muscles were video games, no longer having the strength and dexterity to hold and manipulate console controllers. Because I never tried, PC gaming never factored into that. A few years ago, I bought a customized computer, soon forgetting that I had a pretty decent graphics card in my machine.

To fill the void, I started to watch walkthroughs of video games on YouTube. Eventually, I became captivated via various channels by Minecraft, an adorable Swedish sandbox-style building game. After watching the exploits of Yogscast hosts Simon and Lewis, as well as Zack Scott on his ZackScottGames channel, I felt a burning desire to play it. A hurdle was my wariness regarding keypresses. My only two means for using a computer are my mouse and voice-recognition software, the latter having significant lag, so there aren’t many appropriate games for my situation, ones that don’t require many keys or superhuman reflexes.

I finally bought the game and for cheap, given it was still in one of its many betas, knowing that if I didn’t like it, I’d only be out about $20 USD.

It worked.

I can’t do everything that an able-bodied person can, but I can do enough to thrive. Oddly enough, Minecraft working didn’t remind me of my Radeon card, nor inspire me to even look at my specs. I assumed it worked because of how relatively simplistic the graphics are. I’m funny like that. A few days ago, I needed to play Portal, and indeed I did. The game to my surprise also worked beautifully.

I remembered how powerful my graphics card is. A world once closed off to me was reopened. I felt an unbelievable sense of liberation, even if it’s a few steps below what I was once able to do. I finished the game, bought the sequel, finished that, and demoed Amnesia a handful of hours ago.

That’s my way of telling you where I’ve been the past few days.

Telethons often leave me cold

There is no doubt that good people donate to and participate in televised charity drives, and, given the state of healthcare in this country, organizations can use all the help they can get. What bothers me is the superficial way in which sufferers are presented. One of the many reasons I no longer watch televised news programs, except PBS perhaps, is how much they seem to be focused on storyline and emotional chords than actual content. The Zeitgeist of the media gets translated into, say, the MDA Labor Day telethon.

What you get are not attempts to educate people scientifically about the illness, even on a popular level, or frank discussions on how these things affect people. There is no dialogue. Instead, the public gets lenses slathered in petroleum jelly, focused on children and money shots of crying family members. That is deliberate and misplaced contempt for viewers. That is the media assuming the worst in people and dumbing down information accordingly. Very rarely do we see sick adults or stories of the disabled fighting for civil rights or healthcare reform, if at all.

I find it all pointless; disease in general and muscular dystrophy in particular are horrifying on their own. They don’t need tricks of the television trade to be seen that way. You might even get more people to donate if you spend some time talking about how it is not hopeless, that people are not doomed, that their dollar actually matters, and that other members of the disabled community are missing out on the joy felt by being on the right side of the odds.