Getting away

"I hope you understand that I was born a rambling man."

As this old Allman Brothers song goes around and around in my head, I keep thinking of Adam Kuntz and the article and two letters about him last week in the Los Angeles Times.
There was a large picture, in full color, on the front page - bam! - of a young man sitting in a boxcar of a train rolling through the countryside. The young man, Adam, has long, unruly hair and a bandana tied over his nose and mouth and appears to be wearing a pair of grimy tan overalls.
As the long, accompanying article explains, Adam wears the bandana, which he keeps dampened, to keep the dust from flying into his nose and mouth when he jumps into and rides in open boxcars, which, as the article also explains, he does all over the U.S and constantly.
That photograph really caught my eye and imagination and, like the song, perhaps romanticizes this life, but the article makes it clear that it is a hard one. Along with the dampened bandana, Adam has learned to deal with bitter cold and blistering heat and to always wear shoes because the rail yards are littered with needles. Yes, there are also lots of drugs, along with lots of drinking, in this hobo life, and Adam has had a lot of both.
Not only is what Adam does hard and completely illegal, it is dangerous. As the article relates, Adam had a girlfriend, Ashley, who he loved passionately for being "wild." Adam and Ashley rode the rails with a passion, and then Ashley died after being in an accident.
After Ashley died, Adam went home to his father’s house near L.A, but, before long, he was off riding the rails again.

"Lord, I was born a rambling man."

One thing that struck me about the article was Adam’s father. While he feels sad and guilty about his son and encourages him with work offers, etc., I got the sense that he truly sees Adam as an adult and respects Adam’s choice to lead the life he leads. One may ask if this is a remarkably cool and understanding father or a pitifully weak and unfit one.
Indeed, a couple days later, there were two letters in the paper regarding the article. One was written by an office worker who saw Adam as an inspiration, in leaving the everyday grind behind and following his bliss, living the life he wants to live. The other stated that Adam is nothing but a hopeless alcoholic and drug addict.
I’d like to think that there’s a middle ground, that Adam doesn’t have to be one or the other.
As someone who once considered taking off with an attendant and following the Grateful Dead, as someone who is worried about getting the care that I need (will I be able to pay my attendants? get my wheelchair fixed?) now that voters have pushed California off the financial cliff after it has teetered there for years, as someone who is very much outside the mainstream, being a severely disabled, gay, quaker vegetarian (not to mention my shaved head and six dreadlocks and my overalls and Jesus patches), I understand the temptation to chuck it all and follow the roads and rails to wherever they take me. At the same time, I abhor the damage I have seen done by alcohol and drugs, and I have come to have very little or no tolerance for people who, if they can, aren’t responsible and don’t take care of themselves.
I have been known to call myself a "livehead" in adamant opposition to being labeled a Deadhead. Yes, I’m definitely a "head," but my head is definitely not dead. (And this isn’t about being thought to be retarded. That’s a whole other thing.)
Maybe Adam really is sick, a hopeless case. I don’t know, but, as a quaker who sees God in everyone, I don’t want to think this. I want to think that all the Adams, and I, can be safe and welcome in this world.

Rotting away

Something is rotten in the state of California. I hope it won’t also be my teeth.
I am a strong believer in voting. I am always ranting about how many people don’t vote, and I’m always telling people that they should vote. But the election coming up next week on the 19th really has me in a bind. For the first time in my life, I genuinely don’t feel like voting. (Sure, I can always not vote, but, in addition to being a hypocrite, I will, as I understand it, lose my Permanent Absentee Voter status.)
It’s bad enough that this is a special election - another one - no doubt costing millions of dollars. Whoever heard of an election right before Memorial Day? And what’s with the six propositions being numbered 1A-F, instead of each having its number, as usual. Definitely weird.
The reason for this expensive special election is that the state is billions and billions of dollars in the red, and we voters are being asked to approve a complex series of loans, advances and borrowing. Essentially a bunch of band-aids to tide the state over for a while or until the next bubble.
Despite predictions that the world as we know it will end if the propositions aren’t approved, the overwhelming number of voters, according to polls, aren’t buying them. And I feel like joining these voters. I don’t want more band-aids. I want the legislative system - 2/3 approval required for budgets and new taxes, term limits, etc. - to be fixed, damn it!
What’s really troubling me is that the usual quaker groups and other progressive religious groups aren’t saying I am wrong. They are mostly saying vote "no" all the way down.
But what about all those drastic cuts in services that are threatened, including those for, as always, "the blind, aged and disabled?"
Which is where my teeth come in. Even before this vote, I was notified that Denti-Cal - the state’s dental insurance program - will not pay for preventative care. No cleaning, no fillings. Only pain management and extractions. So that means that I and all the other poor people will be running around, doped up and with flapping gums. Nice.

Freaks are free

The other day, I went to the movies. I wanted to see "Earth." I had my attendant drop me off in front of a local megaplex. After all, I’m an adult, a big boy. I can get and pay for my own ticket, thank you very much.
Maybe not.
"Earth," I said, when the young woman at the window asked me what movie I wanted to see. I also put my wallet up on the counter.
"What?" the woman asked, not understanding my speech. This was nothing new. It didn’t help that I was talking through a small hole.
"Earth."
"Huh?"
"Earth."
"What?"
Okay. One word, one syllable - "Earth." How hard could it be? It wasn’t like there were dozens of movies with titles like that.
Apparently, it was plenty hard. I could hear the woman talking to other people in the office. I could see her looking around desperately. Help!
"Earth," I said. This was more than the third time, but maybe the charm would still come.
No such luck.
"Go to the door."
Okay. This was something new. This was going to be an adventure. I scooped up my wallet and went to the door.
Inside, a smiling woman greeted me. "What movie do you want to see?"
"Earth," I said with renewed hope.
All I got was a sheet of paper put in my face. "Point to the movie you want to see," the smiling woman said. I saw that all the movies playing there were listed on the paper. This was a step, at least. What’s more, the woman thought I could read. All hope was not lost.
I panicked. I couldn’t find "Earth" on the list. Oh, God, what if the smiling woman thought I couldn’t read? What if she thought I was a babbling vegetable? What if----? Wait - it was right there, at the top of the list, in Theater 1. I pointed. Good boy!
"Oh. That’s right there, in Theater 1." The woman smiled and pointed.
I held out my wallet. I owed $7.50. "That’s okay," the woman said, her smile getting even bigger. "It’s on us!"
What? Why? I’m not some charity case! I’m not an idiot from the sidewalk! I’m a college graduate and a writer, a columnist, a performance artist. I’m a blogger, damn it!
Then again, they had put me through all this shit. Besides, times are tough. My S.S.I and my Section 8 have been cut.
"Thank you," I said and went in for free and enjoyed the show.
Maybe I should be dropped off more often.

A definition of insanity

The other night, I was watching a report on Frontline about what happens when mentally ill prisoners are released back into society. What happens, essentially, is that, unless they are really, really lucky and get into a special shelter program for homeless people with chronic mental illness, they eventually commit another crime and end up back in prison.
Which is probably for the best.
Mouth, the disability rights mag that I read, will surely scream bloody murder, but I am just about ready to say that these people should be forced, as they are when in prison, to take their meds.
Because they do just fine when they take their meds. It is when they forget or refuse to take their drugs, as is all too common, that they get paranoid, hear the demonic voices in their heads telling them to do stuff and start committing crimes.
It is probably not nearly this simple, and I am not big on drugs, but this seems a bit like me going out without my letter board or refusing to use my motorized wheelchair. Just a bit. It’s asking for a hard time, if not trouble.
This is a catch-22 and an old argument going back about 40 years. I don’t think anyone argues that it was a bad idea to close the big mental institutions in the 1960's and 1970's, in favor of having and treating the mentally ill out in the community. But nobody says it’s good that very few or no community programs - or the monies for them - were provided.
What this means is that, as I was shocked to read recently, Los Angeles County, where I live and one of the nation’s biggest and most populous, has 100 beds for the mentally ill homeless. What it means is that, as a social worker said on the Frontline program, these people are left to advocate for themselves when they’re out of prison. What a joke - when it takes everything I have to fight for what I need!
Also seen on the program was a good shelter for the mentally ill, one of the few. Not only is it not able to force residents to take their meds, if a resident is caught with alcohol on his/her breath, s/he is kicked out for 30 days. Isn’t this when shelter and support is most needed?
One person profiled in the report ended up back in prison for 10 years. Crazily enough, I couldn’t help but think that this is for the better. At least there, for a good long time, he’ll get the help he so desperately needs.

Victims of society all

I recently read an article about a guy being tried in Colorado for killing a MTF trans. The trial is a big deal, not only because it is not far from where Matthew Shepard was beaten and left to die but also because it is one of the first times someone has been charged with a hate crime for killing a transgender person.
Much progress has been made in the area of rights and justice for glbt folks, partly due to what happened to Shepard. Then again, some people, including the defense attorney, are at least implying that the trans woman more or less asked for it and contributed to her demise.
Here we go again. It is our fault. It is our problem. We get called "fag," get beat up, killed, because we are out and queer and not staying nicely in the closet.
Likewise, when a few steps stop me from going into a shop or restaurant, it’s my problem. I have to bring my own ramp - or raise a stink and be a big pain in the ass. And the smart guy rotting away in a nursing home instead of living and being productive in his own place, not to mention saving thousands of taxpayers’ dollars? Oh, well, that’s just a sad, little story, and maybe some donations will help.
Meanwhile, what do I, as a non-violent Quaker who believes there is "that of God in everyone" (and as a spoiled brat American), do when I see video taken recently in the Taliban-controlled Swat Valleys in Pakistan of women being buried to their necks and stoned with just the right sized rocks provided by the government and of boys, accused of "engaging in homosexual behavior," being flogged?

Getting on the bus - not!

The other day, I missed the bus - again.
There must be some sort of rule. Call it Pixley’s Law: If I’m at the bus stop on time, the bus is late. If I’m late, even a few seconds late, the bus is always right on time. Always!
It gets stranger. I once applied for a para-transit program. This is one of those deals where a wheelchair-accessible private taxi picks you up and takes you anywhere in the county - and this is a big county - for like a dollar. They denied me, saying I’m and too independent, not disabled enough - because I take the bus.
And stranger still. I was once waiting at a bus stop in Los Angeles - yes, I have balls! When the bus pulled up and the driver saw that I wanted on, she literally began jumping up and down in her seat in frustration and despair. It was a scene right out of my play, Jury by Trial - after I had written it.
So much for "Welcome Aboard!"

The Disabling Society

I saw an article in the Los Angeles Times a week or two ago about a group of high school alumni who discovered that a fellow graduate from over twenty years ago was not dead, like they had thought he was (they had even memorialized him at their 20-year reunion). Patrick Chawki, who had been a popular baseball player at Grant High School in Los Angeles, "lay paralyzed and nearly forgotten in a Canoga Park nursing home."
He may as well be dead.
For the last nine years, "Chawki has suffered from a rare disorder that renders him fully cognitive but unable to move or speak. Because he cannot talk or write, he was unable to tell his family how to reach his friends."
Why not? Why hadn’t anyone found a way for Chawki to communicate? And why was he in a nursing home?
There are all kinds of ways and all sorts of gadgets out there to enable someone like Chawki to express his wants and needs. Laurie Green, the Grant High alum who learned that Chawki was alive and in the nursing home, found a simple one - an alphabet poster and thumb up for yes, thumb down for no. Why hadn’t anybody come up with this before?
And in a photograph accompanying the article, Chawki is up in a wheelchair looking as alive as I am and like he can, with help, live in his own place, like I do.
This is classic. This is a perfect example of how our society makes the disabled more disabled, of how everything is set up for the able-bodied and how things that make life for the disabled have to be fought for or are granted as a big favor, usually out of pity or guilt. This makes it easy to see why we hear all those stories of disabled people, usually stuck wallowing in nursing homes, want to die. Why bother living when living is made so hard? (Saying that Chawki "suffered" from his disability and having a second picture of Chawki playing baseball, as the article does, feeds right into this better-dead-than-disabled notion.)
Green and her fellow alumni are raising money to pay for therapy that - surprise, surprise - Medicare and Medi-Cal won’t pay for. They also hope to get Chawki out of the nursing home. When Green told him of this ultimate goal, "his thumb shot straight up." I bet!