Calling Jon Stewart at Comedy Central · 2005-07-16 20:55

Robert F. Kennedy, Jr. has been hard at work these days, pressing before the popular media allegations that hundreds—nay, thousands—of public health professionals, bureaucrats, scientists, medical doctors and other presumably (pick a histrionic adjective) heartless, money-grubbing, penny-pinching, incompetent, compromised, cowardly, disreputable kow-towers to Big Pharma, have conspired over many years to obscure the systematic mercury contamination of a generation of vaccinated children diagnosed with autism.

In so doing, Mr. Kennedy engages in demagoguery and caricature, not thoughtful analysis of scientific evidence, or of human motivation, or of a range of experience beyond that of his like-minded acquaintances.

It has been dismaying to witness the extent to which uncritical reporters have been willing to spotlight Mr. Kennedy’s bombastic assertions, and the assertions of those who have enlisted him in their cause, with little apparent concurrent attempt made to consider the outlook of those whose lives are also touched by autism, but who have no reason to believe that they or their family members have been “mercury poisoned.”

Here’s the letter that I sent to Jon Stewart at Comedy Central this morning, as soon as I learned that Mr. Kennedy had been booked for an appearance next week on The Daily Show:

July 16, 2005

Dear Mr. Stewart & Colleagues,

bq. I am mother of two teenagers, one with an autistic spectrum diagnosis, and I am also a huge fan of your show. I understand that RFK Jr. is scheduled to appear next week to discuss his latest crusade, i.e. autism and vaccines. I urge you to be considerate of the fact that autistic citizens will be watching your show and listening to what you and Mr. Kennedy have to say about them. Do us all a favor and don’t make jokes about autism and autistic people, okay? And please curb the all-too-common tendency to refer to autism in the most melodramatic terms, or to emphasize what a horrible burden autistic people are supposed to be on society. It gets really, really old after a while, especially now that the autism=poisoning crusaders are so deeply immersed in their campaign to convince the world that all autistic people are “toxic.” The barrage of media attention being given to this litigation-inspired controversy has been more than a little overwhelming. The “poster children” whose parents flaunt their before-and-after pictures before the world may have something to say about being so portrayed once they grow up. Despite what many of the autism=poisoning campaigners have to say, autistic children grow up to be autistic adults, and there are plenty of them out there (even though not all have been formally diagnosed). Most are capable of communicating; they read, they watch TV, and they hear what is being said about them. So do many autistic children, even those who haven’t begun to speak yet. See The Petition to Defend the Dignity of Autistic Citizens to get a sense of how many autistic folks and their family members feel about being described in sensationalistic, dehumanizing ways.

bq. I also hope that you will consider the fact that families have very different ways of dealing with the revelation of a child’s autism. RFK Jr. currently represents the agenda of a small segment of the “autism community” that is determined to hold pharmaceutical companies, doctors and public agencies liable for a condition with a well-documented genetic component. It certainly helps to raise Mr. Kennedy’s profile as an environmental activist and potential political candidate to hop on this bandwagon. His recent public statements indicate that he is determined to promote the grandiose idea that an insidious conspiracy exists to hide the wanton poisoning of children; however, he appears to have little familiarity with autistic people, little understanding of autism, and no appreciation whatsoever of the fact that there are many families who have no reason to point the finger of blame at vaccines. His informants would like everyone to forget this; they also have a bad habit of referring to parents like me who do not attribute our family member’s autism to vaccines as being “clueless,” “in denial,” and so on. Please read the attached letter to David Kirby (author of Evidence of Harm) for more about this.

bq. Sincerely,

bq. Kathleen Seidel
http://www.neurodiversity.com

I hope I’ll hear back from someone at The Daily Show. At the very least, I hope that Jon Stewart will take the opportunity to make this upcoming interview a challenging one; he’s certainly capable of doing so. The fact that his show is basically a comedy program with a fairly short time allotted for interviews leaves me a little concerned that the segment will devolve into yet another opportunity for Mr. Kennedy to toss a few conspiracist sound-bites to a public hungry for heroes and spectacular exposes. I hope that Mr. Stewart will take some time to educate himself on the subject of autism, and with the long history of dramatic announcements of causes and cures that are familiar to those who have lived with a diagnosis in the family for any significant length of time.

Alas, at this point, I doubt that I’ll hear from Mr. Kennedy; I have written to him twice so far (in May and in June) to offer this mother’s perspective on the campaign of which he has become a vocal part, but he has not been moved to reply. It seems that he and his comrade David Kirby have one thing in common besides a political agenda and a cluster of outraged, well-connected friends with autistic family members: an unwillingness to communicate in a meaningful, substantive way with autistic citizens and their loved ones who disagree with them, and who are willing to express their disagreement and their concern about the impact the autism=poisoning crusade is having upon their lives.

Comments


  1. As a member of a family that is affected by Autism it is with great respect that I say I admire your interest in preserving the dignity and humanity of those with autism, yet I feel compelled to defend the position of the “crusaders.” The melodramatics, as you call them, are valid feelings of family members. I understand that you may not feel that autism is caused by mercury, but to say that those who do have not given “thoughtful analysis of scientific evidence” is absurd. To be completely honest, I would argue that the studies which you would likely refer (CDC, NIH, ect) were conducted in a manor that is unscientific. I’m sure you’re response would be to call me a conspiracy theorist, but I contend that such agencies have complied data in way so that it is misleading before. (In depth analysis of the studies conducted by these agencies reveal significant flaws in statistical practice. See here: http://autism.about.com/library/weekly/aa072501a.htm ) The argument of those who believe that mercury played a significant roll in their children’s autism do not claim that genetics played no part in the tragedy, as your posting here implies, but rather that the genetic roll is a predisposition, much like a predisposition to some cancers. The science here is complicated, and like most medical science doesn’t apply to all cases and all individuals.

    I know how much autism can pain a family, especially a mother. I hope that you continue to fight for the rights of people with autism, but recognize, that we who believe mercury has damaged our children are not on a ‘crusade,’ but also fighting for the dignity of our children. We are not the enemy. — Hannah    2005-07-26 19:27    #