MickeyMusing’s blog

I get it.  Michael Jackson's death was a big story that legitimately rated headlines--for a day. We are now on day four of non-stop coverage with breaking headlines about every conceivable aspect of this case and of the Jackson family. Enough already. The American media is resorting to taking their cues from notoriously unreliable British tabloids like The Sun and News of the World, so not only are we bombarded with Jackson news--we are bombarded with most likely inaccurate Jackson news. 

The difference in American media vs credible British media is stark.  If you really want to know what relevant news is happening in the US, check the BBC online. 

The first boy to allege that he was molested by Michael Jackson is apparently recanting his story today, 16 years later, feeling overwhelmed by guilt over the singer's death. Jordan Chandler is now saying that his father, Evan Chandler, cooked the whole thing up with a crooked attorney, Barry Rothman, for the money. The rift between father and son came to a head years ago with Jordan requesting a restraining order against his father in 2005, a request that was granted (http://www.foxnews.com/story/0,2933,209470,00.html). This recent action seems to jive perfectly with an article published in GQ in 1994 that thoroughly laid out the evidence to refute the molestation charges against Jackson. It is reproduced on this this blog and on some others: http://floacist.wordpress.com/2007/08/22/gq-article-was-michael-jackson-framed/.  It's a long article and very disturbing, but worth a read.

Of course, there was more than one allegation of misconduct leveled at Jackson. We don't really know the truth (and probably never will) about his conduct, but before assuming, as so many have, that 'where there is smoke there is fire' and jumping to conclusions about his guilt it may be worth considering that his bizarre behavior--his clearly skewed boundaries and detachment from reality about the fact that he was, in fact, a grown man and not some version of Peter Pan--rather than any actual sexual misconduct made him a perfect patsy for people with greedy plans and no scruples. 

Child abuse allegations are a perfect weapon when wielded by savvy people intent on manipulating circumstances in their favor. Abuse of children is reprehensible and nothing raises the public ire more than the specter of a grown person manipulating innocent children. However, we know that these allegations are sometimes false--often spectacularly so (Jordan MN case, McMartin preschool case). The excessive media coverage of these events, rather than contributing to the actual administration of justice, usually results in a bizarre form of social lynching prior to the facts of a case being fully revealed. These cases demonstrate how important it is to get it right because if you get it wrong--either way--you have destroyed lives. We seem to have forgotten that in the Jackson case, being only too willing to believe a man with his eccentricities was clearly guilty, because after all 'where there's smoke there's fire.' There was plenty of smoke, but no fire in the Jordan 'sex ring' case and the McMartin case, too. 

As is so often the case, there were few winners to emerge out of this complex mess of allegation and extortion. If Jackson truly were guilty, he has paid the ultimate price living as a virtual pariah for nearly two decades. His first accuser hardly fared any better and is now said to be distraught and guilt-ridden over his part in the scam. There was nothing but public humiliation in it for the second accuser and his family whose claims were rejected by the court.  It is truly sad that the only person who seems to have benefited from the Jackson molestation allegations is a psychopathic father, Evan Chandler, who cared more for money than for his son.  Don't actually believe in ghosts, but if I did, I would hope the spirit of Michael Jackson would haunt this man to his grave.

Update: 
Contrary to the above, the UK based News of the World (a tabloid) published a story suggesting that Jordan Chandler is actually going to publish his 'sex abuse' diaries, detailing his intimate relationship with Jackson.  http://www.newsoftheworld.co.uk/news/381252/Jordy-Chandlers-secret-diary-of-sex-abuse-with-Michael-Jackson.html.  It appears that Jackson will be tried yet again in the court of public opinion.

Did I Mention I'm a Lobbyist for the Health Insurance Industry?

It is with some despair that I watch the goings-on in the health care reform debate. I truly believe that this historical period is not only our best shot at real reform, but most likely our only shot, and it is enraging to watch the influence of the health insurance lobby, physician's lobby (AMA) and other powerful special interest groups frame the debate. Our current system of care amounts to passive eugenics, purposely weeding out the sick and allowing them to suffer and face untimely death because they are a 'drain' on society--or more accurately, a drain on health insurers bottom line. Isn't that exactly the same rationale eugenicists have used for decades to support their vile policies?  Tom Daschle narrowly avoided nomination as Secretary of Health and Human Services and I think we should count our blessings. His recent comments support opponents of a public option for health care reform expose his true motivation and a health industry lobbyist and demonstrate the conflict of interest that is poisoning the opportunity for real reform.

Open Letter to Tom Daschle:

This morning I took a call from a patient who is a member of the organization I work for. She has a 7-year-old son who is rapidly losing lung function and is heading for transplant if this disease progression can not be managed. Her physician ordered an inhaled drug, Pulmozyme, to help him get rid of excess secretions in his lungs and hopefully cut down on the nasty infections that are scarring his airways. Pulmozyme is a patent-protected drug with FDA approval to market. However, the bulk of the testing done on Pulmozyme was done in cystic fibrosis and the market approval was for that condition only. Because the evidence for efficacy of Pulmozyme only exists in cystic fibrosis, insurance companies often deny this drug to individuals with similar need, but a different diagnosis. The prescribed dose of Pulmozyme for this child costs $2,100 each month. Even with insurance coverage, the co-pay for Pulmozyme for this family would run $300 to $500 per month. Pulmozyme is one of seven medications this child takes and some of them are even more expensive. He does not qualify for Medicaid because he is not yet "sick enough." What exactly do you propose as a non-public option for people in this situation? They simply can't afford the medication, so their 'option' is to watch their son get sicker and finally succumb to symptoms that are treatable.

This is the reality on the ground. Over-priced drugs and therapies, niggling rules imposed by the insurance company to avoid having to pay for over-priced drugs and therapies and a dismissive attitude by society that assumes having insurance actually means you can afford health care. If this is the nightmare faced by those with insurance, imagine what is happening to those of us without. 

So, congratulations. By your comments endorsing the position of the Republicans opposed to a public option, you have just endorsed the continued misery of millions of vulnerable Americans who don’t nicely fit the actuarial models of the insurance industry.  As someone who currently can't get insured at any price because of a well-managed chronic illness, it disgusts me that--once again--the very people who created the problem are going to benefit most from the solution. I am tired of patiently waiting while people with no stake in the game--elected officials and others who are both wealthy and well-insured--debate whether I am deserving of health care at all and watch families fall into financial ruin as they try to secure care for their children. To allow the same industries that feel no remorse about decisions to deny necessary health care to certain people based on actuarial models--literally life and death decisions distilled to a simple calculus about impact on the bottom line-- more of a voice in this debate than American citizens is an outrage. As far as I’m concerned, you and others who oppose a public option are guilty of passive eugenics, sitting by while private industries decide which American citizen is entitled to care, knowing full well the current private insurance model leads to preventable illness and untimely death.  To assume these industries will suddenly become good actors, more concerned about American health and prosperity than their own greedy bottom line, is ridiculous.  To expect them to do so after watching the government cower under pressure from their lobbyists is obscene

It is clear that many people involved in this debate have no actual idea what is going on at the grassroots level. I have heard talking heads, including elected officials who should know better, suggest that the uninsured and underinsured ‘choose’ not to have coverage. That may be the case in a very small minority, but the vast majority of us either can’t get insurance due to a pre-existing condition or can’t afford the outrageous premiums. Under the current system, not only are you penalized for medical conditions over which you have no control, but you are doubly penalized for attempting to responsibly manage your health with your medical records serving as the basis for increased premiums or outright denials of coverage. It is legalized discrimination. To suggest that the average American, who these days is having trouble just holding on to his/her home, should find a spare $1,200 - $1,500 per month lying around for premiums, plus be able to foot the bill for co-pays, is just plain ignorant. The ‘option’ to pay for insurance (if you are lucky enough to be deemed insurable at all) that costs 1/3 to 1/2 or more of your total monthly income is no option; it’s a recipe for financial disaster.  Haven’t we had enough of that already?

Your suggested alternative, shifting the burden off the federal government and instead onto state and local governments that are already broke and have far fewer resources, only ensures that the goal of covering all American’s will fail. You must surely know this, so this plan is exposed for what it really is, a way to sustain the status quo with private industry actually calling the shots, while appearing to make an effort at reform. This is an insult to those of desperate for real reform.

Our elected leaders managed to overcome their differences and find a 'public option' for banks and other industries. It is about time they find their collective will to do the same for the American people. 

Michele Manion
Phoenix, Arizona

It's probably no surprise for me to confess to being very disappointed with Barack Obama. He deserved a few months to adjust to the job and to show us his "chops," so I dismissed the early red flags as part of the learning curve or as his attempt to unify the country by appealing to conservative voters. I'm beginning to fear that Obama is a closet conservative, or at least is more concerned about winning the support of conservatives than he is in championing the progressive agenda that got him elected. This is the behavior of a garden variety politician--not a leader--and we sincerely hoped and believed we were electing a leader. His refusal to hold the Bush administration accountable despite the clear will of the people that the truth about what was done in our name be made public, the egregiously discriminatory and insultingly ignorant anti-gay language of his Justice Dept's recent filing in defense of the Defense of Marriage Act, his refusal to reverse policies that interfere with transparency in government.  All of these sound like what we would expect from a Republican administration (except the blatant homophobia in the DOJ filing--I don't think even most Republicans would have sunk to that level) not an Obama administration.  I voted for the guy because we really do need change, but feared he would end up being just another politician--which so far seems to be the case. I'm not terribly surprised, but I sure am disappointed. I think it is perfectly appropriate and necessary to hold elected officials to the same standard and not to let party BS get in the way of that.  What Bush, et al did was wrong.  It does not suddenly become right because Obama's doing it and those of us who were the most vocal about the Bush misdeeds need to be the most vocal about Obama's, as well. 

If the past is the best predicter of the future, Obama's willingness to concede to the conservative point of view to win political patronage bodes very poorly for meaningful health care reform.  As someone who has been uninsured for more than eight years, primarily because private insurers in this country have decided I am not deserving of coverage at any cost based on common, well-controlled medical issues, I can't even describe my frustration at the current tone of the debate. It is ridiculous to let the people who created the problem--pharmaceutical companies who have manufactured diseases out of conditions that are simply part of the human condition in order to sell overpriced drugs, private insurers who view health as a commodity and discriminate without penalty against the sick and the weak and the American Medical Association which currently represents only about 20% of all practicing physicians because their bias for conservatism and in support of industry is anathema to most professionals actually interested in healing--have the strongest voices in crafting a 'solution.'  As someone who has felt pretty much voiceless, invisible and at the mercy of a medical system that rewards the healthy and wealthy and treats the sick--the people the system is designed to serve--as cultural pariahs, I am truly feeling a sense of despair at this turn of events. Obama was our only hope. We have no power, no political clout and no access to the corridors of power where the decisions that affect our lives are being made.  This was where hope and change came into play.  You could feel the desperation of the millions who came out to support Obama believing he was their best, their only, hope for a voice in the new America that only works for the rich and the corporatized.  With each new news report about the administration, we are witnessing hope turn to despair. What a waste and what a shame.

Obama certainly has not distinguished himself as a champion of civil rights when it comes to gay issues. It's not clear if this stems from his own deep-seated ambivalence about whether or not human beings who are homosexual are actually fully human and therefore deserving of the same consideration as all other humans or whether he is deathly afraid to torque off the bullying religious right.  Either option--bigot or coward--is pretty unappealing. Arguments have been made that this issue simply is not as crucial as some of the other big issues facing the country; health care, unemployment, economic collapse, etc. But I think you could make the case that tolerating discrimination in any form directly impacts all the big "significant" issues of the day.  After all, if it is okay to discriminate against a specific group of Americans, legally and codified in policy, what's to stop policy makers from doing the same when decisions about access to health care, employment rights and equality in financial practices are on the table?  How is a gay man or woman who attempts to assert their right to serve their country only to be told that their 'shameful' condition means they have a different standard to meet than their hetero counterparts any different than a sick person who, legally for now, is discriminated against when insurance coverage issues are decided with the full support and acquiescence of the health care industry lackies in the United States Congress?  In both cases, their value and equality as humans is being called into question to satisfy the belief systems of the intolerant and/or to support the bottom line of the already wealthy

Now comes word that our military has taken their bigotry a step further, not just tolerating discrimination against gays, but actively recruiting the most hateful and ignorant of all human beings, neo-Nazi White supremacists, into their ranks. The balls out, aggressive, no-holds-barred stupidity of this policy, given our recent propensity to invade and occupy countries that are chock full of non-Whites, is hard to fathom. That this-literally-hateful policy is being used to defend an equally egregious policy, the so-called Don't Ask, Don't Tell (DADT) policy, is simply unacceptable. DADT, which was the Clinton administration's ham-fisted effort at compromise, 'allows' gays to serve their country as long as they never speak about or reveal their sexuality. It was always a dumb, childish and clearly discrimatory policy.  Essentially, it relies on what my children relied on when playing make-believe, i.e. magical thinking. Pretend something is one way and then that's the way it really is. Since hetero soldiers are not required to keep their sexuality to themselves, DADT codified different treatment for different citizens and our elected officials, military braintrust and apathetic citizenry accepted it with little dissent. The rationale for DADT was that hetero soldiers, bigots that they were apparently all assumed to be, would not accept gay colleagues and the presence of gays in the military would cause dissension.  This rationale has now been kicked up a notch to justify discriminating against gay soldiers in favor of White supremacists (can't believe I actually just wrote that and that it's true), with our military apparently deciding that when it comes to bigots vs. gays, it is more justifiable to protect the psychological pathology of bigots than the civil rights of gay Americans.

At the bottom of all this ugly intolerance is the fanatical wing of the Evangelical "Christian" movement, which rails against gay marriage, but happily accepts and promotes violence to achieve its aims and embraces White supremacy without question.  Dangerous "Christian" extremism has infiltrated our military and institutions like the Air Force Academy in Colorado Springs (neighbor to James Dobson's Focus on the Family militia) are now for all intents and purposes Evangelical strongholds (links for further reading are below). This not only violates the Constitution of the United States, but puts military might in the hands of people who arrogantly believe they alone represent God's will.  Given a choice between carrying out God's orders (which, by their intolerance of any other viewpoints, they clearly believe they are the only ones qualified to interpret) and orders of the Commander-in-Chief's, it's pretty clear where they would feel their duty lay.

As someone who was raised a Christian in a fundamental home, I bristle at the gall of these people to usurp the name of Christ to justify their bullying and bigotry and can't understand why there isn't a bigger backlash against it. It would be like the more rabid members of the NRA, all hunters, deciding that they were the only true followers of Ghandi, claiming they alone have the knowledge of what Ghandi really meant--his example and actual writings be damned. They would then mangle Ghandi's message and call their belief system "Ghandianity" and self-righteously proclaim that efforts to bully others into accepting their misguided beliefs were noble attempts at 'Evangelical Ghandianity.' Hopefully, they would be treated as the absurd, ridiculous fools they are and yet no one sees or is willing to point out the parallels with some of today's more noxious Evangelical Christians. Jesus must be so proud.  Those most vocally asserting their 'Christianity' support their absolute entitlement to personal wealth at the expense of others, accept and even embrace intolerance and bigotry, and have few qualms about the righteous justification of resorting to violence as a means to enforce their personal brand of morality.  Do any of these things sound like Christ?  Who do these people think they are fooling?  Us, I guess. And they are right. As long as we let them operate unchallenged and our elected leadership cowers in fear before them, we don't need to be an official fundamental theocracy, we are one by default.  With policies like DADT excluding qualified soldiers based primarily on religious bigotry on one hand and accepting White supremacists into the military on the other, we are directly responsible for putting power in the hands of those least qualified wield it and most likely to abuse it. To reference an Old Testament parable (the story of Daniel and Nebuchadnezzer) "the writing is on the wall" and to ignore it is foolish and dangerous.

More info about Evangelical bias in military academic institutions:
Online Journal
CNN
New York Times
New York Times, II (our tax dollars at work!)

I am so glad someone had the guts to finally address this critical topic.  With all the attention to the economic meltdown, flu pandemics, etc, we have really lost site of our core American value that what you look like is more more important than anything else.  Fat actors, even if they are middle-aged and have earned the right to focus on something other than their appearance, are a sure sign that our society is on the edge of complete collapse.  It must be stopped!  Maybe we can get a congressional mandate on body mass index for A list actors (and scale it down for those on the B, C, and D lists) with fines and jail time for those who don't comply.  Or, since it is inexplicably socially acceptable in our culture to bully and discriminate against fat people--even though that sort of behavior would not be tolerated against any other group--maybe we should consider organizing some grassroots movements to ridicule and torment fat actors until they finally achieve an acceptable physique.   

Good grief, what a superficial, ridiculous thing to worry about!  Anyone who looks to Ted Casablanca as the paragon of culture deserves whatever unfulfilled life they end up with. 

Despite being a needy little guy, Gus has decided that he is not very interested in bedtime snuggling. At least not with with me. He has a definite preference for sleeping with Rory, who really is not a much of a snuggler.

Gus Contemplates His Fate

I've attempted to reason with him--after all, snuggling with me is not strictly torture as defined in the Geneva Conventions--but as Donald Rumsfield would say, sometimes you just have to go to bed with the dog you have, not the dog you want. 

BTW, isn't it odd that when your dog snores it's adorable and endearing, but when your partner snores it's grounds for justifiable homicide?

October 25, 2008

Dear Governor Palin,

I applaud your interest and stated commitment to improving the quality and availability of care for children with special needs. As the mother of a now grown special needs child and the founder and director of an organization dedicated to research on her disorder, I know firsthand the challenges families of these children face. Unlike trisomy 21 (Down syndrome), my daughter’s disorder, a rare genetic disease called primary ciliary dyskinesia (PCD), does not enjoy broad public awareness, which makes finding health services and funding for research even more difficult.

Last week, in a policy speech, you indicated that certain research expenditures were wasteful and foolish. The specific example you used was fruit fly research. Because I believe you are sincere in your desire to help those with special needs, I was dismayed to hear your perspective on basic science research. When my daughter was diagnosed in 1991, we were told that her disorder was so rare there would never be genetic research done on it.  Finding a patient group large enough for human genetic studies would most likely be an insurmountable challenge.  But people were working on PCD genetics--albeit indirectly. Basic scientists were unraveling the genome of a single-celled algae called Chlamydomonos. This organism was simple and plentiful and scientists could grow pools full of it for research.  In 2002, the first PCD gene was discovered in an ortholog of Chlamydomonas. Since then, several more have been identified, resulting in the first-ever genetic test for PCD and the promise of genetic therapies for this incurable condition in the future. It can not be overstated that these advances are the direct result of research on, quite literally, pond scum. It was heartbreaking to me to hear a candidate for national office make a joke of these efforts simply to score political points and I was saddened beyond measure for the families relying on basic science research in fruit flies that you chose to single them out for this unwarranted ridicule.

Translational research, applying the discoveries of basic science to human populations, is a critical element of medical science advancement.  In this country, we have suffered through the William Proxmire “Golden Fleece” awards and other attempts by politicians to gain political points by criticizing science they simply don’t understand. Because I was hopeful that you would be a true ally to special needs community, I was particularly dismayed to see you participate in this activity and ask you to spend some time speaking with the individuals involved in basic science research and educating yourself on the promise these activities offer to people with rare, genetic and incurable diseases.

A recent article by the Massachusetts General Cancer Center published in the peer-reviewed journal Current Opinion in Genetic Development states that “more than 60% of genes implicated in human disease have Drosophila (fruit fly) orthologues.” A very short list of human diseases with fruit fly genetic correlates includes neurological and neurodegenerative disorders (including Parkinson’s, Alzheimer’s and spinal muscular atrophy), birth defects, development delays (including autism), tumor suppressor genes (ironically in melanoma, your running mate’s genetic curse), infertility, polycystic kidney disease, deadly and catastrophic lipid metabolism disorders, and Huntington’s chorea.  Again, this is a short list.

I am not an expert at fruit fly research, but was able to compile this list in about five minutes by doing a simple Internet search of the government-maintained National Library of Medicine database of scientific publications (PubMed:http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&itool=toolbar). I do not think it is too much to ask our national leaders who will be responsible for establishing crucial health and science policies to do at least that much.

Special needs communities have never had adequate representation in this country. Attempting to manage the extraordinary challenges of caring for chronically or catastrophically ill family members leaves us short of the financial resources and time required to mount effective lobbying efforts. As a result, we do not wield political clout and end up being an invisible minority group with few supporters. Your high-profile status gives you the opportunity to change that for us and I ask you to consider working with the groups who are engaged in daily efforts to improve the lives of special needs individuals through important research initiatives. We truly welcome your support. 

Michele Manion, Executive Director
Primary Ciliary Dyskinesia Foundation
Phoenix, Arizona

For more information on PCD: www.pcdfoundation.org