Tuesday, November 18, 2014

The Politics and Practicalities of Death

The Daily Beast
I am conflicted rather than absolute about the issue of suicide, assisted or not. I understand life can approach the intolerable. There's been more than one extended discussion since the asisted suicide of the young woman in Oregon, but my position that the state has no business in regulating suicide, assisted or not, remains unchanged.  

My main objection is the codification, which in turn places a societal judgment on who is and who is not to be considered as a candidate -- whose life is worthy of continuance. Codification of assisted suicide diminishes the value of certain lives. Codification of assisted suicide is the very apex of the proverbial slippery slope, as we see by the example of the Netherlands in particular where active euthanasia is being practiced. Any codification of assisted euthanasia cheapens my life because it codifies a value judgment on my life as a person who uses (depends upon) a wheelchair and a ventilator. Once the question of suicide moves into the public arena it becomes a political issue, which was young woman in Oregon intention. She made her death a political statement. That was her right.

A person can choose death when his or her life becomes unbearable. It need not be approved by some sort of law in the name of a so-called dignified ending of life. 

I, however, recognize that death is inevitable, and oftentimes ugly. There is an alternative, one that is reversible, if a person chooses death and then changes his or her mind. Such an alternative was written about in The Daily Beast under the (sensationalistic) title "The Nurse Coaching People THrough Death by Starvation."

That said, I am weary of all this discussion about the best way of dying: the issue we as a society should be concentrating on is how to live fully in a humane, democratic, and accessible society rather than how best to terminate the weak and the ill.

Saturday, October 18, 2014

Not Smart Enough or Brave Enough

A few days ago I thought I might have given the wrong impression on Facebook when I remarked that I had enough pills to end my life. I have no intention of swallowing them, except one-by-one, but in this discussion of assisted euthanasia someone thought I had put away a significant amount for that purpose.

No. I like life. I enjoy my life. I appreciate my life.

But that, and the continuing story about the woman with an untreatable brain tumor moving to Oregon to avail herself of the assisted euthanasia laws in that state, sparked a thought: I could move to Oregon (or Belgium, or the Netherlands, or Switzerland) and in my condition (a wheelchair user, ventilator supported), I am certain I could find a physician who would hand over the drugs needed to kill myself.

I would only need to say, "I am irretrievably depressed, and I cannot live like this any longer."

Depression would do it, yes, for me; but not for you, unless perhaps you were depressed and had no disability.

I've heard "I couldn't live like that" more than once when someone regards my wheelchair, and therein lies the rub with assisted euthanasia as it applies to certain people with disabilities. Our lives are seen as less worthy.

Add depression, and people will have no trouble signing the ticket for a one-way trip to the other side.

But if a depressed person isn't severely disabled—not rollin' around in a wheelchair sucking on a ventilator—it becomes a tragedy. There's no need for me to name a recent example, is there?

That's why I think assisted euthanasia laws are problematic, even as I have the deepest empathy for a person trapped in a swamp of desperate pain because of a fatal disease. Many in the medical field say there's no pain that cannot be controlled by medication. I do not know that from experience. 

What I do know is that I fear a physician who has no real concept of my experience or my attitude or my emotional state counseling me about the time and circumstance for suicide.

What I do know is that our federal and state drug laws are draconian. A person in severe, long-term pain should be allowed open access to whatever narcotic might help. What happens thereafter is no business of the state.

I say this recognizing that this exposes that person to abuse, even perhaps being a victim of murder, but I think the danger to the individual is far less than being subsumed into a system wherein suicide is sanctioned option and there are mechanisms for it to be carried out.

Thursday, October 2, 2014

Frustration Is My Name

Ask me why I hate being a crip, and I'll tell you this: it's because the cat knocked my computer on the floor this morning. 

"Oh, yeah? How are you on the internet then?"

Well, I'm using the kid's Chromebook, that's how. Thank you very much.

Back to the cat. It jumped off the dishwasher and into my lap while I was getting tea. Then when I rolled into my room, it jumped from my lap toward the stand where my MacBook Pro was sitting -- Crash! Bang! Snap!  The MacBook bounced off the hardwood floor.

  • Step one: I try to pick it up with my reacher stick. No go.
  • Step two: I call my closest neighbor, our best friends. They're out of town.
  • Step three: I think, If I can slide the Mac onto a towel, then I can use my reacher stick to lift up both ends of the towel and make a sling to pull the Mac into my lap. Good idea. Didn't work. Towel kept bundling up.
  • Step four: read the next book in my stack to be reviewed. Done about a half hour ago. 
  • Step five: reluctantly find the Chromebook and get on the Internet to complain, whine, and do a Google search for Poor, poor pitiful me ...

This is what I hate about being a crip: not being able to accomplish simple tasks that a norm-job could get done in 30-seconds.

Hate. It.

Big. Time.

But then there's this: everyone cannot do something. What I'm dealing with is simply a different set of parameters determining the scope of what I can or cannot do.

A very philosophical rationalization, don't you think?

*Addendum: if my Mac is broken from bouncing off the floor, there's a certain half-Siamese feline that better run for her life

Wednesday, September 17, 2014

Volunteering for the Death Penalty

The mechanisms of the so-called "right to die" movement -- as if a human being had any other choice -- has taken a bizarre turn in the peaceful country of Belgium.
BRUSSELS (Reuters) - A Belgian murderer and rapist serving a life sentence is to be allowed to have doctors end his life following a ground-breaking ruling under laws in Belgium permitting people to request euthanasia. 
Frank Van Den Bleeken had argued that he had no prospect of release since he could not overcome his violent sexual impulses and so he wanted to exercise his right to medically assisted suicide in order to end years of mental anguish. 
"Over recent years, he has been seen by several doctors and psychologists and their conclusion is that he is suffering, and suffering unbearably," his lawyer, Jos Vander Velpen, told state broadcaster VRT. 
The judicial ruling was the first involving a prisoner since the euthanasia law was introduced 12 years ago. 
It was not clear when the medical procedure, to be conducted in a hospital, would take place, the lawyer added.

Is there anything logical to be said about this process? The murder victim suffered the loss of her life, her future; she did not choose to die; but the murderer gets a chance to end his (supposed) suffering by choosing to die. 

Is Orwell rewriting Alice in Wonderland?

Of course, Belgium is the country that approved the voluntary euthanasia of twin brothers who were deaf and who were going blind. 

I am not God. I am one of those who would have surrounded the woman at the well, unworthy to throw a stone. However, I cannot see why the state should be involved when a person has the will and the means to end his or her life. What the state permits, it can demand. And personally, I fear a State that might has the power one day to kill -- euthanize -- those who need assistance to care from themselves. 

Thursday, September 4, 2014

Advocating for Irony

image from THE NEW YORK TIMES 
My disability activists friends have already seen this story, most of whom reacted with What the ... ? 

On the other hand, I have many friends who aren't in the movement, and so it's a story worth recirculating in the mainstream.

It boils down to this: The Disability Rights Legal Center has appointed a new executive director.

Hot news, huh? 

Well, there is this: the new director of the DRLC is an attorney who most recent position was with an organization called Compassion and Choice.

Why's that news? Compassion and Choice was formerly the Hemlock Society, perhaps one of the most notorious and extreme "right to die" organizations. There are several fundamental issues people with disabilities worry over—access to education and employment; access to home assistance rather than institutionalization; and the idea that right-to-die laws will evolve into compulsory obligation-to-terminate laws. 

We're not talking about the paranoid Palin death panels here. We're talking about a culture developing in the USA similar to that in the Netherlands where assisted euthanasia is now evolved into "let's look the other way" involuntary euthanasia. 

I am not naive. I know a technologically driven society will move toward "cure" of disability, and so disability, in spite of democratic, human-centric principles, society will evolve toward seeing disability as either fixable or intolerable. 

We see it already in abortion, which is a medical technical solution applied to certain types of disabilities. Look up the statistics on abortion numbers when the child carries the gene for Down Syndrome. 

This is nothing new. At nearly the same time, the DRLC made its appointment the New York Times  carried a report on a memorial for people with disabilities killed by the Nazis.

Do I believe you are a fascist if you advocate for assisted suicide laws? No. I can even visualize a circumstance where I might be willing to murder myself. I simply think there is no safe place for the government to tread on this swampy ground.

I also think those who hired the assisted suicide proponent to advocate for disability rights apparently have no sense of irony, let alone common sense.

Friday, August 29, 2014

Laissez le bon temps rouler

My grandmother once said she didn't like the hills where we live because she couldn't see anything. I thought that odd because even though she'd spent her adult life on the Great Plains she was born in the hills of Tennessee, territory very similar to the Ozarks here.

I feel the same way, albeit in reverse, about New Orleans. I feel at home in the Crescent City, at least down in the French Quarter, almost as much as I feel at home in the desert—and more than I feel at home here in the Ozarks. 

We've been down to the Quarter three times in recent years, and the last time we were there I saw multiple bumper stickers with Laissez le bon temps rouler. We'd gotten as far as toward home as Memphis on that trip before I thought, "That would make a good replacement for the bumper sticker I had on the battery case of my previous wheelchair." It was Live to Ride, Ride to Live.

When we journeyed down there earlier this month, I told the woman I sleep with, "Don't let me for get to buy a let the good times roll bumper sticker!"

But there weren't any for sale. In fact, the only Cajun anthem, Laissez le bon temps rouler we saw was on a shot glass, or maybe it was a coffee cup. I wanted neither. I did finally discover a refrigerator magnet with C'est la vie on it, only to discover there are not many metal places on my wheelchair where it can be attached and still be visible. The girls are off to a craft store tomorrow, and I'm adding velcro to their list.

I really would like to have a Laissez le bon temps rouler bumper sticker, though. Live to Ride, Ride to Live was appropriate to my outlook those many years ago, but now—although still entranced with irony—my philosophy is evolving from stoicism to hedonism.

But of course, C'est la vie fits either, doesn't it?

Monday, August 25, 2014

Paying It Foward

No one can return from vacation without getting nails done and hair trimmed, at least according to the woman I sleep with, and so since we'd only driven five hours from Jonesboro to Springfield, she decided to stop there in the big city to accomplish those tasks.

I declined to enter the mall, it being kept at a temperature in the 60s and stocked with temptations, and so I took a book and stationed myself on the edge of the parking lot in the shade of a tree. It was a 90'ish day, but there was a breeze, and I was comfortable.

I'd been there about a half-an-hour when a woman in a Subaru pulled up near me, rolled down here window, and said, "Are you all right, hon?"

I knew she'd stopped because I wasn't moving and because I was in a wheelchair, and so I replied, "I'm fine. Thank you."

"I just wanted to make sure you were okay. I saw you when I pulled in, and when I came out, you hadn't moved."

"Oh, okay. My wife's inside. She'll be there for a while. I don't like the cold air-conditioning in there, and so ... "

She drove off, but it was only a few minutes before a mall security guy drove up on a Segway. The same conversation, more or less, with him saying, "I had to rescue a guy the other day whose power chair quit on him in the middle of the parking lot," and me adding, "I have a cell phone, and I can call for help, but I do appreciate your concern."

That was his first trip. Then he swung buy to make sure everything was still okay. And then he made a third trip because "My supervisor said people are reporting there's a man in a wheelchair stranded on the southwest lot."

I gave up, deciding that the best course of action would be to keep moving from one shady patch to another, a tactic that kept me from being targeted by well-meaning passers-by and reduced calls to the mall security office. And then my wife returned.

I don't resent the well-meaning people concerned about my welfare. It's the sort of individual action that makes for a humane society. People with disabilities often achieve full independence, but I've been in more than one situation in which I needed help because of a problem with my wheelchair. In fact, before cell phones, I would always tell someone where I was going and when I expected to arrive before setting out on a wheelchair-journey.

Conversely, how many times that day did one of those people who worried over my situation pass someone on a busy corner holding a piece of cardboard on which was written "Homeless," Or "Need Work," Or "Will Work for Food?"

I counted three on our way home that afternoon, and each time—no, we didn't stop—I couldn't help put compare my situation with their own.

The woman I sleep with plays the pay it forward game, most often at gas stations when she seems a young mother alone with a car-full of children, especially if the car is older and the woman seems frazzled and overwhelmed. Both of us talk about the Cardboard Sign Tribe, though, without ever doing much about it. There've been exceptions. We gave five dollars to a guy on the New Orleans River Walk, and recently she, being far more generous and compassionate than I, bought a meal from a fast-food restaurant for an older fellow on a street corner.

"He looked so sad," she said. "Everything he owned in a cart, a dog on a rope, and more days without a bath than I'd care to think about." This was at the first intersection off the interstate in north Springfield. "I drove around the block," she said, "found a Burger King, and bought him a five dollar lunch and took it back to him. He said thanks when I handed it to him and said he was really hungry."

I don't know what I learned that afternoon, at least anything different than what I already know: fate and circumstance make for funny bedfellows.