The Autism Vote
Managing Editor's Note: Sorry, Kent! I Couldn't find, "Mr. Popularity."
By Kent Heckenlively, Esq.
Suddenly I feel like one of the popular kids.
In her speech at the Democratic Convention Hillary Clinton said, “I will always remember the single mom who had adopted two kids with autism. She didn’t have any health insurance, and she discovered she had cancer. But she greeted me with her bald head, painted with my name on it, and asked me to fight for health care for her and her children.”
Then there was John McCain at the Republican Convention. “I fight for Jake and Toni Wimmer of Franklin County, Pennsylvania. Jake works on a loading dock, coaches Little League, and raises money for the mentally and physically disabled. Toni is a schoolteacher, working towards her master’s degree. They have two sons; the youngest, Luke, has been diagnosed with autism. Their lives should matter to the people they elect to office. They matter to me. And they matter to you.”
Recently we got the news that Barack Obama sat down with the New Jersey Coalition for Vaccination Choice. And by now everybody knows that Sarah Palin has a child with Down's Syndrome, and in her acceptance speech promised that the parents of special needs children would always have an advocate in the White House.
There is no other way of saying this: We have caught the attention of the people in power. Great job, everybody!
But like the new kid in school who finds he’s suddenly running around with the popular crowd, there are dangers.
The people who lift you up have motives of their own, and not all of them are benign.
The democrats want to use autism as tool in their quest for greater health coverage. But unfortunately it was the health coverage we already had, and those wonderful vaccines our plans encouraged us to get for our children that caused this problem. And besides, will any existing health plan cover things like chelation, B-12 shots, hyperbaric oxygen chambers, or even more out-of-the-box therapies like stem cells? I think not. Thanks for your concern, Hillary, but it’s not enough.
The republicans want to use autism as a tool to show they’re compassionate people. And don’t we make the perfect victims? I mean, we were perfectly content living our lives, going to jobs, getting married, deciding to have children, and then, wham! Our plans got turned up-side down, and if we weren’t sinking into depression, we were emptying our bank accounts to try and improve the future of our children. Outside of being thrown in a North Vietnamese prison camp for five and a half years, how much more heroic can you get? Thanks, John McCain, for vowing not to forget us. But you need to do more.
When I was in college my friends thought I’d become a political columnist. I didn’t have the burning partisan fire to enter politics, but I always admired the political passion of those who did. My daughter’s godmother was the main fund-raiser for the democratic congresswoman in our district when she knocked off the republican incumbent. My best friend growing up was recently asked to be on the President’s Council of Economic Advisers. Even when I disagree with people, I admire their courage in standing up.
So I say thank you to Hillary Clinton, John McCain, Barack Obama, and Sarah Palin for bringing us to the party. Because of you, more people are thinking and talking about autism. That’s a great, positive step forward.
But if you want my vote, you’re going to need to do more. Our victory is not achieved by getting mentioned in the speech of a political candidate. Our victory is achieved when the truth of what has happened to our children is revealed to all and the best minds of science are turned to finding out how to help our kids.
That’s when you get my vote.
Kent Heckenlively is Legal Editor for Age of Autism.
Parents, what do you think? Would you vote for McCain and Palin because of her promise to be an advocate in the White House?
What do you think about how her party is a proponent of school vouchers? http://www.trusera.com/health/stories/autismrealitynb/governor-palin-as-a-special-needs-advocate
Posted by: tara | September 09, 2008 at 07:11 PM
How has all of this gone un-noticed? Or has it?
McCain has been a friend to our cause since Frist tried to insert the Lily Rider into the Homeland security Bill back in 2002. He was one of only 3 Repubs who went up against Frist.
[http://www.mothering.com/discussions/archive/index.php/t-111257.html]
He is most assuredly aware of our concerns and is defiantly open researching vaccines!
A-CHAMP Parent-Advocates Meet with Senator McCain
Senators McCain and Lieberman Send Letter Requesting Senate HELP
Committee to Conduct Hearings on Causation, Thimerosal & Related Autism Issues
[http://autismactioncoalition.org/McCain_Lieberman_letter.html]
He is privvy about the dangers of Big Pharma and is not afraid to take them on.
Friday, January 11, 2008
McCain to Pharmaceutical Innovators: Drop Dead
[http://townhall.com/Columnists/TimothyLee/2008/01/11/mccain_to_pharmaceutical_innovators_drop_dead]
February 6, 2008, 7:53 am
Big Pharma Not Fond of McCain’s Big Mo
[http://blogs.wsj.com/health/2008/02/06/big-pharma-not-fond-of-mccains-big-mo/]
He says what he thinks and believes, like it or not.
As reported by ABC, on Feb. 29, 2008:
John McCain Enters the Autism Wars.
[http://blogs.abcnews.com/politicalpunch/2008/02/john-mccain-ent.html]
What one active, autism advocate blogged on the subject:
[http://adventuresinautism.blogspot.com/2008/03/critical-mass-john-mccain-thimerosal.html]
Saturday, March 01, 2008
Critical Mass: John McCain, Thimerosal, The Government's Vaccine/Autism Consession and ABC News
[http://adventuresinautism.blogspot.com/2008/03/critical-mass-john-mccain-thimerosal.html]
In case you thought John McCain wasn’t antiscience
[http://blogs.discovermagazine.com/badastronomy/2008/03/04/in-case-you-thought-john-mccain-wasnt-antiscience/]
Actions do speak louder than words.
Posted by: Sam's mom | September 08, 2008 at 10:46 PM
Sadly, I think that most of the talk directed at the autism community in the coming months will consist of little more than vague offers to "do more, care more and (maybe) spend a little more," but I doubt that we will see anything substantial. It may come down to who "seems" to be the most compassionate...and that's unfortunate. Your point is well taken - the question is: what exactly is it that people want? Like the buffet of biomedical therapies out there, it seems everyone wants something different.
Posted by: Mark Schweitzer | September 08, 2008 at 09:02 PM
Remember this?
--Quick, somebody call Sherlock Holmes. Or at least the Hardy Boys. Or maybe even newly-designated Homeland Security Secretary Tom Ridge. There's a Washington mystery that needs solving.
Everyone in D.C., it seems, is utterly baffled as to how an ugly little provision shielding pharmaceutical behemoth Eli Lilly from billions in lawsuits filed by the parents of autistic children made its way, in the 12th hour, into, of all things, the 475-page Homeland Security bill.
"It's a mystery to us," shrugged Eli Lilly spokesman Rob Smith.
It's a mystery to us, too, echoed spokesmen for the White House, the Department of Health and Human Services, and physician-turned-senator-turned-drug-company-shill Bill Frist, who had originally penned the Lilly-friendly provision for a different bill.
The haphazard lawmaking also proved baffling for pharmaceutical industry lobbyists, and for White House budget director Mitch Daniels, a former Lilly executive, who made a very public show of disavowing any knowledge of the amendment's mystifying genesis. Gosh, maybe the little provision just flew down from heaven. Or was immaculately conceived. Or maybe Osama bin Laden snuck over and planted the little public policy bomb himself.
The outrageous rider stuck onto the end of the Homeland Security bill provides security for Lilly from suits filed by the families of autistic children who believe that their kids' condition is linked to Thimerosal, a mercury-based preservative made by Lilly that used to be a common ingredient in childhood vaccines.
But in a town where knowledge is power, and where there is no shortage of people willing to take credit for even the most minute accomplishment, there has been a sudden outbreak of people playing dumb. Official Washington is observing a code of omerta that makes the Sopranos look like the loose-lipped gals on "The View." In other words: nobody's seen nothin'.
Here are the clues we have to work with: over the Veteran's Day weekend, GOP negotiators from the House and Senate hunkered down to finalize the details of the elephantine security bill. At some point -- no one is willing to say when -- someone -- no one is willing to say who -- inserted the Lilly provision -- though no one is willing to say why.
It's vital that we solve the mystery -- even if you believe that the custom-made legislation is justified. We need to find out because this kind of behind-closed-doors monkey business is an affront to our democracy -- the very democracy this bill was theoretically designed to protect. Perhaps it should have been called "The Homeland and Lilly Protection Act."
"The ability," Rep. Dennis Kucinich, D-Ohio, told me "of a special interest group to secretly insert provisions into law for its own narrow benefit and to the detriment of the public interest raises fundamental questions about the integrity of our government."
Kucinich has vowed to lead a challenge to congressional rules that permit our representatives to do the bidding of their deep-pocket donors away from the prying eyes of the public. At the most crucial part of the bill-drafting process -- when the language of the law is being finalized -- Washington's corporate alchemists work their black magic to turn legislative gold into self-preserving lead.
"It's a defect in the system," explains Kucinich. "When a bill goes into a conference committee, it gets yanked out of the sunlight and into the shadows. The conference process is a closed one, so you can go into a conference committee and basically add anything or take out anything you want and no one really knows. It transforms the legislature into a secret cabal."
So this fight is about a lot more than pushing for the repeal of the Lilly provision, something Sens. Debbie Stabenow, D-Mich., and John McCain, R-Ariz., have promised to do when the 108th Congress convenes in January. It's about putting an end to the gaming of the system that is turning the legislative process into a prize-a-minute carnival for big contributors. "Inserting such favors for special interests in a bill is a directive that can only come from some very high places," Stabenow told me.
Intriguingly, Stabenow, McCain, and Kucinich may have found an unlikely ally in their battle -- one with a very personal stake in the issue. It turns out that Rep. Dan Burton, R-Ind., the chairman of the Government Reform and Oversight Committee, has a grandson who first began showing symptoms of autism within days of receiving vaccinations containing Thimerosal. "He became radically different," says Burton, "banging his head against the wall, running around flapping his arms. Twenty years ago we had one in 10,000 children that they thought was autistic. Now, it's more than one out of 250."
I remember it well, I went to D.C. to protest the Lilly Rider to the Homeland Security Bill. So, in my mind, there is no question who has my vote in November!
Rebecca Maher
Posted by: Rebecca | September 08, 2008 at 01:50 PM
All pandering aside, we need to use this election to get our issues on the table.
Whatever your affiliation be the squeaky wheel, the pounding drum, the person who says you'll get my vote if...
I'm am so proud of the NJ parents for voicing their concerns in front of Obama's motorcade.
Wouldn't it be great if we showed up everywhere like that!
I have a child with Autism and oh I vote!
Posted by: KarenAtlanta | September 08, 2008 at 12:19 PM
Yes, the president does appoint judges to the supreme court, and Roe v. Wade is federal law. Both McCain and Palin are Constitutionalists and believe these decisions should be left to the STATES to decide. I personally agree - it just seems like the more power the federal government has, the worse off we are.
I'm sorry this exchange has been unpleasant for you, but it seemed to me like it was being stated that mearly electing McCain/Palin would automatically make abortion illegal in all cases. I just thought I'd give the other side because it is unpleasant for me to hear that sort of misinformation. Sorry if I offended.
Posted by: Sally | September 08, 2008 at 10:40 AM
Sally --- Last I heard the Supreme Court has the final rule on Roe v. Wade and the President of the United States appoints judges to the Supreme Court.
Geez -- my first unpleasant exchange on AOA.
Posted by: Diane | September 08, 2008 at 10:17 AM
Gosh, I think it's a bit unfair to say because John McCain and Sarah Palin are pro-life that all of a sudden abortion will be illegal. That is not at all how our democracy works. Actually, they both think the decision should be at the state level (less federal power, get it?).
But you all know as well as I that even if McCain/Palin are elected, the views of the vice president (no abortion, ever) does not automatically or even probably become the law of the land. Geez...
Posted by: Sally | September 08, 2008 at 08:32 AM
And those of us with daughters with autism will not be able to make healthcare decisions for them should they be raped and become pregnant, even if/when we have medical custody of them as adults. I have three girls with autism. We're already on the outskirts of mainstream medicine by going the biomedical route. Imagine facing a surgical procedure for your child in the proverbial back alley? And I happen to be PRO LIFE for myself (witness my Bella. I was offered the opportunity to terminate her.)
And as people start salivating over Sarah Palin because she has a son with special needs and a sister with a child with autism, I have a two word response. Alison Singer. Also an autism Mom. Head of Autism Speaks. How's that working out for us?
Posted by: Stagmom | September 08, 2008 at 07:41 AM
Kent -
Great piece. I guess you're staying home on election day. (No sarcasm intended.) Their talks are rhetoric. I think the word is out, but I DON"T think they're going to do anything about it. They are feeding into people's emotions.
In the era of amniocentisis (sp?), how many women do you know who would choose to have a child with Down Syndrome instead of a pregnancy termination? In my liberal world: not too many. If Sarah Palin becomes VP (and possibly president if you think about the one-heartbeat-away thing) that option will be off the table.
Posted by: Diane | September 08, 2008 at 07:24 AM