Saturday, October 31, 2009

A few book reviews . . .

Two Tankers Down: The Greatest Small-Boat Rescue in U.S. Coast Guard History Two Tankers Down: The Greatest Small-Boat Rescue in U.S. Coast Guard History by Robert Frump

My rating: 5 of 5 stars
I really enjoyed this well-researched story of the breakup and loss of two WWII-surplus oil tankers off Cape Cod fifty-some years ago. It gives a real insight into what rescue service was like before the advent of helicopters and electronics, but after the end of the age of sail.

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Twenty Million Tons Under the Sea Twenty Million Tons Under the Sea by Daniel V. Gallery

My rating: 3 of 5 stars
The author of this book commanded the US Navy ship that drove U505 to the surface during World War II, and then successfully siezed the sub and towed it back to the United States.

The Road to Woodstock The Road to Woodstock by Michael Lang

My rating: 5 of 5 stars
I really enjoyed this book because it took me back to people and places from when I began in the music business, a few years after Woodstock.

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Riding Toward Everywhere Riding Toward Everywhere by William T. Vollmann

My rating: 4 of 5 stars
I have read a few other stories of riding the rails, and I've ridden a number of freights myself, so I've always got a sort spot for these stories. If I have any criticism of this book, it's that there are two many "literary diversions" and not enough current storyline. That said, it's still an enjoyable tale of modern day train hopping; a subject about which little exists.

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Emergency: This Book Will Save Your Life Emergency: This Book Will Save Your Life by Neil Strauss

My rating: 4 of 5 stars
Follow Neil as he moves from skeptical reporter to survivalist to defender of his community. That sounds sarcastic but it's not . . . it's really a commendable journey and something many could benefit from, me included

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You Better Not Cry: Stories for Christmas You Better Not Cry: Stories for Christmas by Augusten Burroughs

My rating: 5 of 5 stars
You might say I'm biased because I appear in many of my brother's stories, but I will say this . . . the last two stories are by far the best and most meaningful.

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Wednesday, October 21, 2009

One more way to be rude

Thanks to modern technology, I now have one more way to seem rude while actually paying close attention. I made this discovery when my friend Jan invited me to the annual meeting of the Connecticut River Watershed Council. Come on, she said, It will be interesting. I’m feeling more social these days so I decided to go . . .

The first part was kind of neat, because free food was involved. We started on a big outdoor patio that contained several tables covered with edible treats. I didn’t know any of the people except Jan, but I did recognize chocolate strawberries when I saw them, so I went at it. A few minutes later I was sated and it was time to go inside to listen to the speakers. Five years ago I’d never have gone near such a thing, but now I resolved to give it a try. I went in and sat down with Jan, her friend, and a table full of strangers.

I nodded politely and sat fairly still as I waited for the program to begin. I can do that, as long as I don’t have to wait too long. Within a few minutes, the crowd settled down and things got going. I wasn’t sure what I was going to hear; I just hoped it would be interesting. I was not disappointed.

The first speaker worked for an outfit called Covanta. I didn’t know who or what Covanta was, but I paid attention as she began to speak. She said her firm was in the business of converting trash to energy. How do they do that, I wondered? In the past I’d have sat there and listened and pondered, but now I can be pro-active. I whipped out the iphone and went on the hunt.

The speaker’s voice faded to the background as I began reading, though I looked up from time to time to make sure she and I were still in the same places.

My first search took me to Covanta’s website, where I learned who they were and what they do. Moments later I was reading about the Bristol trash-to-electricity facility. Being a geek, I was captivated by the descriptions of the burner and boiler installations. That sent me on yet another Google search. . .

As I searched at 100MPH the speaker plodded along at a walking pace. I continued to glance up, but very little was happening. The speaker droned on, and the audience sat quietly. I was quiet too, but inside my mind was churning. Luckily the mental clatter was contained by the flesh around my head and ears.

I sifted through her spoken words for phrases to Google on the iphone. Within moments a description of the latest high efficiency burners was waiting for me on the screen. I read it and had a new appreciation for Covanta, a company that I’d never even heard of a few minutes before.

I looked back up in plenty of time for the speaker’s concluding remarks. When the time came for applause I joined in as enthusiastically as anyone else, fortified by my enhanced understanding.

That’s when I realized how my tablemates perceived my behavior. That’s awfully rude, to just ignore the speaker and work on your computer. But is that really what happened? I think not. The speaker was there as a representative of Covanta, and her job was to inform the public about her company and make them feel good about it. I’ll bet she succeeded better with me than most anyone else in the room, thanks to my little iphone.

I’ll give you some examples . . .
I learned what Covanta does, and where they are based.
I now know what a waterfall furnace is.
I know Covanta’s Hartford plant runs steam turbines at 880psi
I am even familiar with the inspection standards for boilers that run at those pressures.

Do you know any of those things? And how many other people in the room got that out of her talk? I would argue that our speaker achieved her goals better with me than with anyone else there (unless there was another geek with an iphone.)

I have always gotten restless in situations like that because my mind moves faster than any speaker’s voice. Knowing that, I don’t usually go to presentations. But the iphone changed everything for me. Instead of sitting there with questions in my mind, I was free to search and explore while generally guided by the speaker’s words. It was great.

If the purpose of a lecture is to impart knowledge, iphone enhanced listening is a great success. Unfortunately, the other people in the room don’t see it that way. They see me looking at a pocket computer and imagine all sorts of things. Some believe I’m looking at Russian Dream Girls. Others think I’m playing Donkey Kong. No one guessed the truth.

A few people in the crowd might have seen me and thought . . . he’s acting a bit autistic. And maybe I was. But if that’s true, it’s catchy. More and more people are bringing iphones to events, and it’s one more way in which technology is making all of us act a little more autistic at times in exchange for enhanced productivity.

Every time we answer questions with a pocket browser we miss the chance to raise our hands and engage another human. Every time we write an email we lose out on a face to face conversation. At the same time, the benefits of “electronic augmentation” are undeniable. But where does it lead?

Friday, October 16, 2009

The road goes ever on

Some of you asked for more pictures from the road. Why? I don't know, but here they are . . .

I left the Dams of Potsdam behind to start my journey home. I hoped to make the whole trip in daylight but I was defeated by navigational error. I actually started off on the wrong foot, taking the wrong road out of town. Luckily, I only went 22 miles on the wrong road. It's desolate enough up there that a person could go a lot farther than that with ease. I got turned around and headed for Lake Placid. As I climbed the weather went from cold to cold and snowy. I was glad to be running the road in daylight, though that did not help my direction finding. I made yet another error and ran a ways toward Plattsburg before swinging back to my course at Sarnac Lake.

Driving got a bit dicey as the road was went in spots and dry in others. So you'd roll into a corner and hope for the best. Driving this road in daylight it's easy to see how motorists just vanish. In this picture you can see they've lost so many vehicles into the lake that they have placed concrete barriers where the shredded guard rail used to be.

The road in this spot does not twist too much but the up and down parts will put you right into the air if you get some speed behind you. I suspect that's how the cars before me made the transition from road to lake. After a fast run I stopped at the world famous Tail O The Pup for some traditional bar-b-q. Fortified, I set out again.

This picture really gives a good sense of the mountains up there.

There were other spots where the road straightened, and you could run fast for ten or fifteen miles without seeing anything but woods. Not a car, or a house, or even a telephone pole. Nothing but empty road. The woods up there grows fast. They say hunters still stumble on undiscovered crashes from the fifties and sixties, and I can believe it.

I was glad to make it home. An old Mercedes, a camera, nine hundred miles, a thousand college students, and three days.
It's a lot of stuff to pack into a half-week.

Wednesday, October 14, 2009

A drive in the country

When I heard I was booked to speak in Potsdam, New York, in mid-October, I thought, That’s great! I’ll drive there. It will be a scenic trip through the foliage.

That was an innocent but foolish notion. Potsdam is 350 miles away. Mostly north. I also decided to drive a twenty-some-year-old convertible. That was another foolish notion, though it turned out ok.

Departure day dawned cool and rainy at my home in Amherst, Massachusetts. But a quick look at the Weather Channel brought good news – skies were clearing, or at least they were supposed to. You can take the old convertible, I said to myself. It will be a fine day for top down motoring.

I set out for work in a steady rain. From my office in Springfield I watched it pour all morning. Then the Weather Gods smiled on me. The rain stopped, and the skies cleared. I began to feel good about my vehicular choice, just as the choice began to malfunction.

We are in the business of servicing automobiles, so it should not surprise anyone that we serviced my own car before leaving. Oil was filled. Headlights were adjusted. And most important – the cigarette lighter power outlet was repaired. After all, we can’t take a trip without Portable Devices!

I topped the tanks with fuel, and I was off. I drove through the toll booth to the Mass Pike West as I pushed reset on the trip odometer. The old car gathered speed as we rolled around the on-ramp. It was indeed a fine fall day as I climbed the hill to Westfield and made the run up the mountains at Blandford.

The edges of the steep road were littered with overheated vehicles, but my car purred like an old dog as we motored through the Berkshires. Things changed when I reached the top. Up there, at sixteen hundred feet, the air should have been thin. But it wasn’t. It was actually thick – some would call conditions cloudy; and it started to rain.

By the time I reached Albany, there were traffic jams in addition to the rain and clouds. But I persevered, and rode them out. Finally I found clear road as the Northway opened up past Saratoga. Traffic picked up speed. I was finally on my way!

There was even fine fall scenery. I knew it was there because the signs on the road said so. Unfortunately, I did not actually see any scenery, because it was now dark, thanks to the delays from rain, traffic, and construction. Still, I was in a good mood as I listened to tunes on the iPod with my new Bose headsets.

Whenever I take a long trip by car I play music from the seventies, and it makes me wish I had stayed in music production back. Where would I be today, if I had? Would I be on top of the world making records or movies in L.A.? Or would I be in prison in Mongolia? There’s just no telling.

I had those thoughts as I passed Lake George, Ticonderoga, and Champlain. In no time at all, it was time to turn off the Northway onto country roads for the final leg of my trip. That’s where things got interesting. I had no navigation system, I was far from any cell phone coverage, and I’d never been there before. Nonetheless, I had some printed directions, which I began to follow by the light of a pocket flashlight.

Alone in the dark, I climbed into the mountains on a twisty two-lane road. I’d encounter the occasional unpaved patch, which made me wonder if this was really the right road to Potsdam, but there weren’t any alternatives visible in the dark, so I hammered along.

It started to rain, and as the elevation increased, the rain turned to snow. Top down motoring was now a distant memory. The temperature had dropped from 65 degrees at departure to 25 degrees in the mountains. There was not a single light to be seen out there, with the exception of my headlights. Not a house, or a car, or even a streetlight. Nothing.

That’s what it means to drive in the country.

As the pavement got slippery I began to notice occasional holes in the string of guardrail that lined the road at every corner. I realized those were spots were more aggressive or more foolish or simply less lucky motorists had found their destiny in the abyss below. My lights did not reach down there, and I made a special effort to avoid that fate.

As you can tell, I was successful.

As I got farther into the wilderness creatures became visible in the dark, at the fringe of my lights. I was in country where moose and bear cavorted in the road, and Wendigo hunted in the forest. Needless to say, I did not stop to play with them. The Adirondack wilderness is not a place where my position at the top of the food chain can be positively assured.

The first sign of civilization was Lake Placid, where I passed drunken revelers eating and throwing the season’s first snow. I made it through town without tangling any of them in my undercarriage. Signs for Potsdam began to appear, so I knew I was on the right path.

The weather began to clear, and I picked up speed. Now there were only occasional ice patches to turn me sideways. It was no longer a struggle to keep the car pointed forward the other 99% of the time. I reached a long straightaway where the headlights seemed to get dim, and I looked down to see the speedometer nudging the century mark. For the first time in 100 miles, I was making good time.

I arrived in Potsdam by nine, only to find the town rolled up for the evening. I battered the door of the hotel until I was admitted, and that’s where I am right now.

But I am about to venture out, to explore Scenic Potsdam. I will report more later.

Monday, October 12, 2009

Some medical advocacy groups fight FOR the cure. We autistics are unique - we fight ABOUT it.

Our society is confronting many serious, chronic medical issues, including AIDS, diabetes, obesity, cancer, Alzheimer’s, MS, heart disease, and autism. What do all those conditions have in common? Every one is something you live with for a long period of time; in some cases all your life. Furthermore, every one has one or more strong advocacy organizations who speak for people affected by the condition.

What makes autism unique?

I’ll tell you. Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups. Why is that, and what does it mean? The recent Autism Speaks video debacle and the continuing controversy over neurodiversity and a “cure” makes me think this is something worth talking about.

The problem starts with autism itself, and how people see it. Unlike cancer and most other medical issues in the news, autism is a stable neurological difference. It’s not a progressive disease. At the same time, autism’s impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It’s no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The “High Functioning” autistic group says, “We don’t need to be cured. We just need tolerance and understanding.”

The Highly Impaired group says, “Enough with the understanding! We need some cures, fast!”

Parents of affected kids say, “I want my kid to have a good life, whatever that means or takes.”

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. “Get rid of autistic disability” morphs into “get rid of people like me,” in their minds. From the HI perspective, the desire for tolerance and the HF statement that, “we are fine the way we are,” seems to be a callous dismissal of their very real disabilities.

Unfortunately, each person who’s touched by autism thinks his autism experience is representative of everyone else’s. And why wouldn’t he? That’s how it is with most other medical conditions. Within reason, my broken leg is like yours. So’s my flu, or even my bypass operation, should I ever have one. Some of us have complications and we do better or worse, but there is indeed a common shared experience.

Autism, by virtue of its diversity, is totally different. Unless he makes a point to study nonverbal autistic life, a high functioning Aspergian will have no concept of life at the other end of the spectrum. And of course the opposite is true too. This misunderstanding is compounded by autism itself, as one characteristic of our condition is an inability to put oneself in another person’s shoes. So conflict is bound to arise.

And then there’s the conflict with the parents. They say, “My kid has this terrible condition,” and high functioning adults see that as an indictment of themselves. After all, they live with the so-called “terrible condition” every day.

What can we do to resolve this strife? I have a fairly simple solution.

First, stop talking about a “cure for autism,” and, “getting rid of autism.”

Second, talk about finding fixes for specific components of autistic disability, like speech impairment.

We should all be able to agree that the ability to talk is a good human trait. So is the ability to eat whatever you want, without getting sick. Therefore, we should be able to agree that therapies that allow autistic people who couldn’t do those things in the past to do them in the future are good. We'd get a long way if we tackled each disability component of autism in this way. Not every one of us is affected by each thing, but the sum total would touch us all in some way.

It seems to me that one change in focus could go a long way to resolve the controversy.

The other thing we all need is some tolerance for differing views. For example, I may see some benefits and some disabilities to my own high functioning autism. There are other people who see zero benefit and much handicap to autism in themselves. Both of us deserve the right to hold our differing opinions and live our lives in peace. There is no reason that can’t happen, though you’d never know it to read many of today’s blogs and articles on the topic.

I certainly recognize the solution is more than my simple two steps. There are still some major ethical questions remaining. For example, who should decide if a treatment or therapy should be given to a person who can’t advocate for himself? Those are the issues our advocacy groups should tackle together, rather than fighting with each other. That's one question; there are many more.

There are also some emotion-charged controversies like the vaccine question that can only be solved by the advance of science. Of course, both sides will say, “The question is solved, my way!” but the lack of consensus suggests it’s far from resolution. That said, it does not have to tear the community apart the way it does today.

When you count the autistic population, plus our families, teachers, and caregivers, there are many millions of people affected by autism in the United States alone. Most of us are just individuals, with little ability to advocate for ourselves regionally or nationally or in some cases, even locally. We NEED strong advocacy organizations to play this role; organizations we can all embrace and get behind.

Can today’s autism advocacy groups embrace this concept? Time will tell.

Until they do, I am sorry to say, none of them speak for me. I know I am not alone in that somewhat cynical view. And that’s a sorry state of affairs for advocacy groups who are supposed to look out for the interests of all people on the spectrum.

Thursday, October 1, 2009

Some thoughts on the Autism Speaks video

I finally watched the infamous Autism Speaks “I Am Autism” video. I had to hunt to find it, because so many parodies have popped up that the Google search was overwhelmed. The first part takes as its theme, “I am autism, and I will take your money, your marriage, your family and I will ruin your life.” That’s an awful lot of intent to attribute to a neurological difference in the brain.

For those of you who didn't see the video here is a link

I cannot recall any similar instance where legitimate scientists ascribed malice or forethought to a disease, difference, or human condition. Cancer kills you, and so does heart disease, but no one says, “I am cancer. I will take your money and take your life.”

Come on, folks.

Autism can be a serious disability. I don’t know any knowledgeable person who would disagree with that statement. But the disability comes about by natural action. Autism can cause serious problems, but they are not the result of malicious action on the part of an “evil force” as depicted in the film.

Frankly, it’s shocking to me that an advocacy group would countenance the production of such a thing.

Suggesting an autistic child is “possessed” by some malign force is something I for one would never do. I want to get rid of the disability aspects of autism as much as anyone, but the mindset depicted in the film does not get me there. I hope Autism Speaks rethinks this campaign and comes up with some different video.

The fundamental problem with the video is that it says, in essence, “autism is bad.” That moral judgment is then inevitably applied to people with autism. That’s wrong, and an organization that purports to exist to help autistic people should know better. It has the same corrosive effect that calling me a retard had, forty years ago. I don’t like it; in fact, it makes me pretty angry.

I have no problem saying, “autistic disability is undesirable.” I believe that statement is true.

Moral judgments such as those in the Autism Speaks video have no place in the description of disabilities, diseases, other health problems.

So how do I think we should attack “the problem?”

First of all, we should recognize that the autism spectrum is very broad, encompassing individuals who perceive themselves as totally disabled and disadvantaged by autism to fully functional people who believe the exact opposite. We must accept that both points of view are valid, for those individuals. My gift can indeed be your disability, if it affects you in different ways.

That is the key to agreement on how we may address the problems posed by autism.
We can say, I want to solve the problem of autistic speech impairment. Or we can say, I want to find out why some people with autism have serious gastrointestinal issues. Those are specific problems which can and will be addressed through research.

That’s the right way to go about this. Pick a specific component of autism, and figure it out. Then find out how to remediate the disability it causes. Having done that, the people who feel disabled by that particular thing will have a solution at hand, which is wonderful and empowering.

Complex problems are always solved one step at a time, and autism is one of the most complex medical puzzles science has ever tackled. We’d all do well to recognize that, break our work down into manageable steps. Then we can put the sensationalism, moral judgment, and showboating aside in pursuit of a common goal.