FINDING JOY IN TROUBLING TIMES

My father was a Hokie at one point in his life, so I’ve always had a soft spot for Virginia Tech (or VPI as Dad always called it). I wondered how he would have reacted to the events of earlier this week. As a Hokie, he would have been horrified. As an educator who considered all campuses sacred, he would have been frightened. As a parent, he would have cried (as I did).

One thing I didn’t worry about too much was how the Little Rankster would react. By and large, he just doesn’t pay too much attention to the news of the day. Then I read a post by my friend, Christina (a/k/a Good Rockin’ Mommy Guilt) on her new blog at Chicago Parent. (I have to say that the new blog really showcases what an exceptional writer she is.)

Christina posed the question of how one explains the horror of a day like the Blacksburg massacre to a child on the spectrum. And I had to think about it. Right now, my son is just too innocent to understand the concept of evil, but some day another tragedy will occur when he’s older ⎯ at a time when I hope he’ll have developed a true sense of empathy and realizes the horror of what has occurred. How can I possibly help him put it all in perspective.

After considering the dilemma, I realized I would tell the Little Rankster about the day he was born. I’d tell him of the joy that day brought to his mother and me. I’d tell him how the joy has remained undiminished ⎯ and has even grown with every day ⎯ despite the challenges his regression into autism brought. I’d tell him how proud of him I was on the day of his birth, and how proud I am of him every day of his life.

I’d spend hours telling him how full my heart is because of him. And then, I’d tell him how around the time of his birth (give or take a couple of hours), a couple of very sick young boys in a place called Columbine, Colorado, decided to insert themselves into the history of evil. I’d tell him of the heartbreak for the parents of those children whose lives were cut short by an unspeakable act. For those parents of Columbine, and now those parents of Blacksburg, the heartbreak is hopefully mediated somewhat by the joy their children brought them in life.

I thank God I haven’t had to face what the parents of the Virginia Tech tragedy are now going through. But that lack of experience gives me a perspective that allows me to understand that for every tragedy ⎯ even those of this magnitude ⎯ there are countless miracles that bring hope and joy. And the greatest miracle of all is love.

Happy Birthday, Little Rankster!

BY THE SHOVEL LOAD

As you may have heard, the Senate Appropriations Committee has been holding hearings on what to do next, now that Congress authorized appropriations under the Combating Autism Act. I have some pretty strong opinions about how the hearings came together, but I simply haven’t had enough time to finish a post on it. I still hope to get one up before it becomes yesterday’s stale news.

In the meantime, my friend, Ginger Taylor, posted her reaction to testimony given to the committee by Julie Gerberding, Director of the CDC. All in all, I’d say Ginger was kinder than I could be. My reaction to the testimony runs either one word or two, depending on whether it’s properly written “bullshit” or “bull shit.”

Go here for Ginger’s post.

THE CAN IS OPENED

There are some people in this world who don’t need to use both names to be identified. Oprah is one of those people. She has so woven herself into our culture that the “Winfrey” part of her name has become superfluous. She’s that big a deal. That’s why there was so much anticipation last week leading up to Oprah’s first-ever show on autism.

When the guest line up for the show was announced, it became clear that the episode was not going to focus on cause or controversial treatments, but rather on the challenges of raising autistic children; in other words, it was to be yet another attempt at raising “awareness.” But one of the guests was to be Katie Wright-Hildebrand, which fueled speculation that something just might get uttered that is usually missing from mainstream media: the “v” word.

As most of us are aware, Katie (who has just about become a one-namer in autism circles) is the daughter of former NBC head, Bob Wright. After Katie’s son, Christian, was diagnosed with autism Bob and Suzanne Wright founded Autism Speaks, which has rapidly become the Pac Man of autism organizations, swallowing up other organizations in its path. Although it would be nice to have a single organization that would have a broad-enough outlook to be a clearinghouse, many of us feel that AS does not speak for us. Indeed, mistrust of AS seems to be one of the only views held in common by members of the neurodiversity and biomedical communities.

In any event, it has been the most open of secrets that Katie and her husband, Andreas Hildebrand, believe that vaccinations may have helped trigger their son’s autism, and that they were utilizing biomedical treatments to treat him. Those views do not seem to fit in neatly with the official AS party line, and Katie did not say much about the issue when making any appearances. Lately, however, there were a few rumblings that came close to being public pronouncements. Then came word that Katie was joining the boards of both the National Autism Association and SafeMinds, two organizations that generally share Katie’s opinions on vaccine damage and effective treatments. Those developments fueled anticipation of Katie’s appearance on Oprah, and one question hovered all over the net: would she say it.

I got the call at work. My wife happened to be home and was able to watch the show. My wife was nearly in tears with excitement as her words came over the phone: “She said it!”

It almost didn’t get said. And as we later learned, it would not have been said if the producers had their way. But in the front of the audience, being used as a resource, was Dr. Anshu Batra, and Oprak asked her about causation. While the doctor (reluctantly it appeared) agreed that “environmental” causes may play a role in causation, she flat-out stated that science “has refuted” any connection with vaccines. Dr. Batra didn’t say that “official” reports (fatally flawed reports at that) failed to find a connection, which would have been more accurate but les dramatic; she said it in away to create the impression the connection had been disproved.

And the rest, as they say, is history. Katie asked, and Oprah let her “open the can.” See for yourself the video showing how it all happened here. The go here to Ginger’s blog to read what was said that didn’t make it onto the air.

ANOTHER YEAR FOR THE RANKINS

Today is not just Easter for us. Today, my wife and I also commemorate another year of married life. So I’m going to take a moment of personal privilege, to publicly thank Sym for putting up with me for another year. She is among the smartest, most passionate, most compassionate, and intense people I have ever known.

Love you, Hon.

WE’RE FROM THE GOVERNMENT AND WE’RE HERE TO HELP YOU (or Is It Still Paranoia If They’re Really Out To Get You?)

A few days before leaving office in January 1961, outgoing President Dwight Eisenhower (who had more than a little experience with military affairs) warned his country of the dangers posed by a new world.

Crises there will continue to be. In meeting them, whether foreign or domestic, great or small, there is a recurring temptation to feel that some spectacular and costly action could become the miraculous solution to all current difficulties. A huge increase in newer elements of our defense; development of unrealistic programs to cure every ill in agriculture; a dramatic expansion in basic and applied research ⎯ these and many other possibilities, each possibly promising in itself, may be suggested as the only way to the road we wish to travel.

But each proposal must be weighed in the light of a broader consideration: the need to maintain balance in and among national programs ⎯ balance between the private and the public economy, balance between cost and hoped for advantage ⎯ balance between the clearly necessary and the comfortably desirable; balance between our essential requirements as a nation and the duties imposed by the nation upon the individual; balance between actions of the moment and the national welfare of the future. Good judgment seeks balance and progress; lack of it eventually finds imbalance and frustration.

. . .

This conjunction of an immense military establishment and a large arms industry is new in the American experience. The total influence ⎯ economic, political, even spiritual ⎯ is felt in every city, every State house, every office of the Federal government. We recognize the imperative need for this development. Yet we must not fail to comprehend its grave implications. Our toil, resources and livelihood are all involved; so is the very structure of our society.

In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex. The potential for the disastrous rise of misplaced power exists and will persist.

We must never let the weight of this combination endanger our liberties or democratic processes. We should take nothing for granted. Only an alert and knowledgeable citizenry can compel the proper meshing of the huge industrial and military machinery of defense with our peaceful methods and goals, so that security and liberty may prosper together.

President Eisenhower went on to broaden that warning to the coming technological revolution that had been born of the war efforts of the 1940s. Specifically, Ike said:

The prospect of domination of the nation’s scholars by Federal employment, project allocations, and the power of money is ever present and is gravely to be regarded.

Yet, in holding scientific research and discovery in respect, as we should, we must also be alert to the equal and opposite danger that public policy could itself become the captive of a scientific-technological elite.

It is the task of statesmanship to mold, to balance, and to integrate these and other forces, new and old, within the principles of our democratic system ⎯ ever aiming toward the supreme goals of our free society.

Alas, statesmanship ain’t what it used to be. Time and again we see that any time large and powerful industries become too closely associated with government policy making, the lines between entities becomes obscured and it becomes difficult to tell who is actually formulating public policy.

A recent 60 Minutes story on CBS, gave us a little glimpse at how the pharmaceutical industry pushed through the Medicare prescription drug bill a few years back, which effectively prohibits the federal government from trying to use the clout of the Medicare system to get lower prices for drugs. That little provision, which costs the American taxpayers billions of dollars, was pushed through by concealing actuarial figures and deft legislative maneuvering. And the government point people who aided the industry were rewarded.

Tom Scully, the administration’s Medicare chief who negotiated the bill, soon left the government for a lucrative position with a Washington law firm where he is a lobbyist for pharmaceutical companies. As for one of the Congressional point persons, Representative Billy Tauzin from Louisiana soon left Congress to accept a job as president of the Pharmaceutical Research and Manufacturers of America (PhRMA). Of course, Billy says he did it out of gratitude for the drugs that helped him beat cancer, but I’d bet the $2,000,000 annual salary that went with the job might have helped convince him.

As was noted in the CBS story, there is currently legislation pending to require the federal government to negotiate lower rates for drugs covered by Medicare, just as they do for other health-care services. What are the chances that provision will become law? Well, even if it gets through Congress, President Bush has promised to veto it. As Representative Dan Burton said of the pharmaceutical lobby:

I mean, they — they have unlimited resources. Unlimited, and when they push real hard to get something accomplished in the Congress of the United States, they can get it done.

The only surprise about the 60 Minutes story was that it made it on the air at all. One rarely sees such objective reporting about an industry that spends millions of advertising dollars.

To be fair, regulators occasionally show concern about the blurry lines in health-care policy between government on the one side and the Big Pharma/Big Health crowd on the other. The Washington Post recently reported on inquiries into the conduct of 103 scientists with links to pharmaceutical companies while they were employed at the National Institutes of Health. Of course, it’s a little premature to say that anything will come of it, as the “inspector general for the Department of Health and Human Services, said his office is looking into the cases ‘to determine whether investigation is warranted.’”

It’s worth noting that even those preliminary steps of inquiry are only happening because members of Congress ⎯ who may be a little more sensitive to appearances of impropriety than is a lame duck administration ⎯ have insisted that something needs to be done. Apparently, there is a suspicion that the NIH is neither adept nor aggressive in policing itself.

Of course, the undue influence of private entities upon public policy is not restricted to Big Pharma/Big Health Care crowd. Recently, Leonard Pitts, the great columnist for the Miami Herald, addressed the rampant conflicts of interest that plague health and science policy making in the Bush Administration.

After 2002, when a National Cancer Institute statement reporting no link between abortion and breast cancer was changed by the Bush administration to say evidence of a link was inconclusive, after the administration cut language on global warming from a 2003 report by the Environmental Protection Agency, after a government scientist was forbidden in 2001 and 2002 from discussing health hazards posed by airborne bacteria emanating from animal waste at large factory farms, after 60 scientists ⎯ 20 of them Nobel laureates ⎯ signed a statement in 2004 accusing the White House of manipulating and distorting science for political aims, after all that, Team Bush has once again been caught censoring science it dislikes.

I refer you to this week's testimony before the House Committee on Oversight and Government Reform. The committee produced paperwork documenting many dozens of instances in which the former chief of staff of the White House Council on Environmental Quality edited scientific reports on global warming. He cut definitive statements and replaced them with doubtful ones in order to portray climate change as something less than the settled science most experts consider it to be.

And what connections with industry tainted the Administration’s actions in the case of that global warming report? The official responsible for the “editing” came to the White House from a position with the American Petroleum Institute, the industry’s lobbiest. Then, not long after his “editing” on the report, the official left government to go work for the most major of major oil companies.

The incidents highlighted by Mr. Pitts are all-too-common, and yet nothing ever seems to be done. The prevailing attitude among the offenders is that they know what is best for us by virtue of their expertise derived by being an insider. That leads to an insufferable arrogance. As Mr. Pitts wrote, the danger of too close a tie between the regulators is bad policy, but another result is an erosion of public trust in the very institutions that should protect us:

I could give you many reasons this makes me angry. I could speak about the people’s right not to be propagandized by their own government. I would point out that this facts-optional approach shreds the government's credibility.

But here’s what really burns my toast: These people think I’m stupid. And they think you’re stupid, too. What else can we conclude of a government that treats us with such brazen disdain?

They think we’re a bunch of doofuses, dimwits and dolts who will never notice that they’ve placed the interests of their cronies above our own.

For the record, I am not stupid and I resent being treated as if I am.

It can’t be stated better than that.