Reply to Boyd E. Haley's response to
Petition to Defend the Dignity of Autistic Citizens
Dear Professor Haley,
Thank you for your lengthy reply.
It's unfortunate that a tape of your presentation wasn't made generally available prior to publication of reports of your presentation. The Doctors for Disaster Preparedness website (http://www.oism.org/ddp/ indicates that previous years' presentations are available for purchase, but offers none for the 2004 meeting.
DDP's report on your talk states that, "Psychiatrists call it attention deficit disorder, autism, autism spectrum disorder, or pervasive development disorder. (Haley) calls it mad child disease and thinks that its various forms represent different levels of mercury toxicity." Further, "The epidemic of mad child disease started at the same time as the mandated vaccine program in 1982-1985."
Drs. Michael A. Glueck and Robert J. Cihak, in attendance at the meeting, reported in their article published at:
http://www.newsmax.com/archives/articles/2004/9/13/112130.shtml
http://www.jewishworldreview.com/0904/medicine.men090704.asp
http://www.taxtyranny.ca/images/HTML/Vaccines/Articles/HIB.doc
and partially reproduced in the Schafer Autism Report at
http://lists.envirolink.org/pipermail/sareport/Week-of-Mon-20040920/000293.html
"He calls it mad child disease and thinks that its various forms represent different levels of mercury toxicity." Further, "Officials, however, are unable to state their hypothesis to explain the epidemic of mad child disease, Dr. Haley said."
Dr. Donald W. Miller, also in attendance at the meeting, quoted your words thus: "Dr. Haley terms autism Mad Child Disease" (at http://www.lewrockwell.com/miller/miller14.html).
In none of these instances is "mad" spelled in caps or identified as an acronym. If these statements were inaccurate or incomplete &mdash statements set forth by the organization sponsoring the conference, and by individuals in attendance at the conference — then it is unfortunate that you did not take the initiative to clarify them before they were widely disseminated, or even afterwards — that is, until the onslaught of public criticism of your choice of words.
In fact, the Jewish World Review, in a follow-up to the Glueck and Cihak article published at http://www.jewishworldreview.com/0904/medicine.men1.asp, states: "We want to thank the hundreds of readers who wrote or called regarding our last two columns, 'Mad Child Disease' and 'Autism and Mercury'. In spite of this being an extremely controversial medical, legal, economic and political issue all but one reader strongly supported our position." Regrettably, Drs. Glueck and Cihak have not published any of the responses to which they refer. In light of your suggestion that your critics misconstrue what you mean by "mad," I would like to see how those who praised the article interpreted the meaning of "mad." It is also notable that this follow-up to their original article refers to its title as "Mad Child Disease" (as it appears on NewsMax), whereas the page for the article currently on their site displays the title "Sad Child Disease."
The report of your speech provided at http://www.oism.org/ddp/ includes a reference to "Pink Disease," where you are quoted as saying, "One mother stated, 'My child behaves like a mad dog,'" an animal metaphor including an explicit reference to "madness" as behavior. Also, you stated in your October 11 letter to me that "the bureaucrats at the IOM, FDA and CDC also are even more disturbed by the MAD Child disease moniker as it directly calls attention to the nature of the damage their agencies inflicted on families of autistic children..." The reference is not to the "vehicle of the damage" — presumably mercury — but to the "nature of the damage" — presumably "madness."
You have described the circumstances leading to creation of the phrase "mad child disease," indicating that it was a flash of linguistic inspiration designed to elicit maximum emotional impact before a small audience of scientists who had just listened attentively to a presentation on Mad Cow Disease. Clearly, the inspiration does not seem so inspired beyond the collegial confines of the DDP annual meeting. By stating, "There were few, if any, parents of autistic children present," you suggest that it is acceptable to use a sensationalistic, historically denigrating term for its shock value if those who might be personally offended are not there to hear it. One might use the same logic to defend the use of the word "nigger" to refer to African Americans, at a conference of caucasian Latin scholars, because of its derivation from the Latin word for "black," and assume that it is acceptable because no blacks would be present to object.
You have offered the explanation that "MAD" is an acronym for "Mercury Afflicted Disease of Childhood." No report of your speech indicates that it was described as such at the time. In fact, the only context in which the phrase "mercury afflicted" is in general use is the field of astrology. It is hard to believe that you conceived of such a tortured acronym prior to using the phrase publicly. Indeed, the first time I have ever seen anyone else refer to "MAD" in capital letters was in an email sent to me yesterday morning, after you distributed your reply to me and to numerous other recipients the afternoon before.
Dr. Miller has been gracious enough to acknowledge the offensive nature of the term "mad child disease," and to agree to discontinue its use, at the same time that he offered his reasons for his concern about mercury toxicity. I wish that you and others who have disseminated the phrase would be willing to do the same. It is unfortunate that you feel the need to label those who are offended by your words as "politically correct," or suggest that they simply misunderstand your analogy or your motives. It is a common bully's ploy to turn the finger of blame on those who are negatively affected by offensive speech or actions, minimize their concerns and accuse them of being "too sensitive," rather than take personal responsibility for one's speech, or admit that one has made a mistake.
The "plight" of families with members on the autistic spectrum has its source in society's failure to accept the existence of cognitive diversity, and of its persistence throughout history. This plight is worsened by the widespread use of sensationalistic language to describe autism. There are many possibilities that exist between "staying quiet, governed by a perceived political correctness," and using language that is part of the long, sorry history of the dehumanization of disabled individuals. In these days of the Internet, words spoken within a small, controlled setting are likely to evade the illusion of control — especially words that have conveyed a strong pejorative connotation for hundreds of years. We will all be dead and gone someday and what will be left are the words on the page, the words in the memory, the scars in the hearts of the people who have been wounded by those words.
As I mentioned in my letter to Dr. Miller, I agree that legitimate concerns exist pertaining to the neurotoxicity of mercury, and I support continued investigation into the matter, in relation to its presence in vaccines, and in industrial emissions and the food supply. However, contrary to your assertion, there has been extensive press coverage of autism over the past few years, as well as hundreds of published academic studies, many of them centering on the etiology of autism. In fact, the National Institutes of Health database shows six currently funded projects that come up on a search for the combined terms "mercury" and "autism." Hundreds of dedicated professionals worldwide have devoted their careers to seeking a deeper understanding of autism. It is hardly supportable to assert that everyone but you and those who agree with your theories are all either agents or dupes in an "orchestrated bureaucratic coverup."
The Petition to Defend the Dignity of Autistic Citizens now contains four hundred signatures, representing autistic individuals, families, doctors, researchers, academics and service providers from every continent but Antarctica. Today, I intend to email all signers to inform them of your reply, which will be posted on my website at http://www.neurodiversity.net/haley_reply.html.
I will end with a fact and a metaphor. I am mother to two teenaged daughters, one on the autistic spectrum. No matter what your motivations, no matter what your rationalizations, and no matter how many parents you know who are willing to tolerate whatever shocking images of autism you might deploy to "stir up an audience," when you toss out phrases like "Mad Child Disease," you are looking this "mother bear" straight in the eye.
Sincerely
Kathleen Seidel
October 13, 2004
