Reply to Boyd E. Haley's response to
Petition to Defend the Dignity of Autistic Citizens

Dear Professor Haley,

Thank you for your most recent email.

The subject of my concern, and the subject that I sought to address in the petition, is not the legitimacy of your concerns about vaccines, but the language that you use publicly to describe autism. I agree that there is a very real need to make safer vaccines, and to develop safer vaccination schedules. At the same time, I believe that there should also be self-imposed limits to the kinds of scare tactics that people are willing to employ in their efforts to educate the public about any given subject, especially people who espouse a humanitarian motivation. Mercury is poisonous, but words can be poisonous, too — including words such as "mad child disease," "plague," "epidemic," "life worse than death," "worse than cancer," "nightmare without end," "demon," "tragedy," and "disaster." The petition was not intended as a personal attack, but as a protest against this most recent and particularly egregious example of sensationalistic language used to describe autism.

You refer to "the power of semantics to either depress or increase the awareness of a situation." I will agree with you on that, and will further affirm the power of semantics to depress or increase the esteem in which individuals are held by their fellow human beings. The shocking nature of a word like "mad" derives not from any clever acronym one might choose to devise, but from its not-so-venerable history as a pejorative label for those whose developmental pattern and level of functioning and behavior and life experience fall outside a narrow range of social acceptability. Those three- and four-letter words tend to be the thorniest ones; they get the strongest gut reaction because they are the ones with the longest, most complicated history. If one wishes to make a visceral impact by exploiting the emotional resonance of a word like "mad," one would do well to anticipate the likelihood that the word will have an emotional resonance in whatever context it is used, and that one might not have any control over the character of that resonance. It is unreasonable to expect that one can use "mad" for shock value in one context, then expect it not to be shocking in another. It is also unreasonable to expect that one can simply redefine the meaning of "mad" from one sentence to another, and expect that readers will promptly subordinate their understanding to the new definition you provide, divorced from its historic connotations. It is clear that you did not anticipate the visceral impact of the phrase "mad child disease," so plainly derived from and juxtaposed with the phrase "mad cow disease."

You have indicated in both your letters that you sought to achieve a rhetorical effect in order to promote a certain theory of autism etiology, to effect legislative change, and to support individual families in their efforts to seek financial assistance and/or compensation. I wish that you would be as concerned about the manner in which your rhetoric affects those outside your immediate circle of acquaintances and supporters. The road to hell is paved with good intentions, and many autistic citizens live a fresh hell every time a new story appears in the paper describing their diseased existence as evidence of an epidemic, describing what a burden they are to society, and describing "research" that has as one of its implied goals a world without autistic people.

This runaway herd of demeaning words used to describe autism has run completely amok. Such words are employed as a scare tactic to sway public opinion through emotional manipulation, with little regard for the consequences to those beyond the immediate range of presumed beneficiaries. And it is a political tactic, not a humanitarian one. You suggested in your earlier letter to me that the exercise of discretion in speaking about disability reflects a form of "political correctness" for which you have no patience, since it would presumably dilute the potency of your message. On this subject, Lew Rockwell was more pointed. Upon receiving his cc of my first reply to you, he immediately responded with a single sentence: "Please take me off this PC list." In other words, "to hell with abstaining from derogatory language." Regrettably, the sort of dismissive attitude embodied in the phrase "politically correct" is one that autistic citizens frequently encounter when they attempt to express their concerns about the way they are stigmatized in society.

If we were talking solely about the world of ideas, "agreeing to disagree" might be a viable option, but it is not. Words are like wild horses — they are powerful and exceedingly difficult to control. You might be able to corral them for a moment, and maybe for a moment they will do your bidding. But they have this nasty way of escaping, and when they do, they can inflict tremendous damage. If a pack of wild horses were heading towards your child, do you think that you would "agree to disagree" with the well-intentioned but heedless cowboy who let them out?

Sincerely

Kathleen Seidel
October 14, 2004


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