Monday, April 10, 2006

Demeaning Words

My second post (now to be my third) was heading off in a substantially different direction, when I came across JB Handley's response to the March 1 RFK article in Ginger's blog. JB Handley's response included the following:

"First off, we're parents. And you [the CDC], in covering your ass, have kidnapped our children's souls. In the wild, the consequence for what you've done is obvious, but being civilized, we will get you with the violence of truth. You see, unlike other body-snatchers, you've made a number of mistakes and left some very clear calling cards... You didn't take our children's souls, you just buried them. They're still there, waiting to come out".

Personally, I find this quite disturbing.

Let's be clear about a couple of things up front. First, this post is not aimed at Ginger. I have the greatest of respect for Ginger's energy, enthusiasm, and efforts, and have some sympathy for some (although not necessarily all) of her views. Her blog serves as a resource of autism information and events, especially those of interest to bio-meds, and this letter was posted as written. To omit or edit JB Handley's words would be doing a disservice to her readers.

Second, it is not intended as a personal attack on JB Handley or his objectives. One may agree or disagree with his views (I personally do not agree with his view - if I perceive it correctly - that all autism is the result of mercury poisoning), but that is not the subject of this post. And on a personal level, I do not know enough about Mr. Handley as a person to comment. To be clear, I am not intending to host a personal attack on JB Handley.

What I do strongly object to is his choice of words and metaphors. I strongly object to the description of autistic children as having their souls 'kidnapped' or 'buried', or that they are victims of 'body-snatchers'. I find the wording demeaning and offensive to my daughter, and think that it is uncalled for, unnecessary to get his point across, and totally unproductive.

I know that autism is not an easy diagnosis for a parent to accept. I also understand the motivation to 'do something', and to mobilize support for one's view, and to do what one considers right in the face of disagreement from others, regardless of whether one approaches autism from the perspective of societal 'acceptance', or 'cure', or any point in between. I understand efforts to motivate others to take action, and the use of rhetorical flourish to do so. But this does not excuse language or descriptions of autistic children (or autistics of any age) as being without a 'soul', or as victims of 'body-snatchers', the implication being that they are less than fully human.

My 33 month old daughter - after a rigorous assessment process - has a diagnosis of severe autism. She has considerable communications, sensory integration, and motor planning difficulties, plus a few significant medical issues that one may or may not consider co-morbidities, depending on one's point of view. Some may consider her diagnosis a 'disorder', others a 'natural variation'. But neither viewpoint relieves her of any of her humanity, or her dignity. Calling her soul-less deprives her of both.

One can make the point that autism is a medical issue (which, admittedly, will still be contentious in some quarters) without demeaning the humanity of those who have the diagnosis. But suggesting that autistics are anything less than human diminishes their worth in the eyes of the larger population that one is ultimately trying to influence. There is enough that divides the community of those who are linked through autism without resorting to language that labels autistics as anything less than fully human.

Personally, I know exactly where my daughter's soul is. It is firmly embedded in the little girl who smiles at me and raises her arms to be picked up and hugged. It is there, it has never left, and it is priceless. Those who cannot see it are looking in the wrong place.

3 comments:

Bartholomew Cubbins said...

This is an extremely important and obviously heartfelt message and I applaud you for making it.

mtwp said...

"Personally, I know exactly where my daughter's soul is. It is firmly embedded in the little girl who smiles at me and raises her arms to be picked up and hugged. It is there, it has never left, and it is priceless. Those who cannot see it are looking in the wrong place."

:-) What a girl. What a dad. Thanks.

Kristina Chew said...

The notion of a child having her or his soul "kidnapped" recalls outdated descriptions of autistic children as like "changelings."

Charlie's autism diagnosis puts him in the "classic" and sometimes "severe" range--not that those terms mean too much when we (as you do) get a smile and that light from his eyes. He's all there and we hope we can be as much for him.

Thanks for helping us all to see the subtleties, complexities, the nuances of so many issues in autism.