A couple of months ago, I was on an international flight, despite the fact that I do not fly often or well. As the plane prepared to take off, it started making a noise that I found earsplitting. The woman in the row ahead of us complained about it and was assured that it would stop when the plane started flying. It didn't. Already anxious, I started to come unglued. I tried to speak to a flight attendant, and she was frightened by my level of agitation and threatened to have the plane returned to the gate.
Fortunately, I was with my boyfriend. Fortunately, he has noise-canceling headphones that he eventually insisted I put on. Fortunately, he was able to assure the pilot that I was safe and that he could "take charge of me."
Although nothing awful happened, I cannot write about this without crying tears of shame. It is truly awful to be adult with an advanced degree who can be completely undone by a high-pitched squeal and a snotty flight attendant. It is terrifying to know that under similar circumstances, I could be tased or even killed.
I understand the fear of being unfairly restrained.
So I understand why the Adult Self-Advocacy Network put a petition on change.org to protest a proposed change by the Center of Disease Control that would add a diagnosis of wandering as a possibility for children and adults on the autism spectrum.
On the other hand, I am a teacher who understands how terrifying it can be when someone with autism slips away. So I understand why Kim Wombles, a parent and advocate, would disagree with that position.
I wish that Kim would have focused her disagreement on the thing she does well: detailed analysis of the facts. Instead, she tried to attack ASAN on the basis on their rhetoric-- the way they expressed their ideas.
I have a problem with that. A serious problem.
People with autism have, by definition, a communicative impairment. People who claim to care about, to be experts on autism, should not attack people with autism for expressing fears clumsily. When the worry that you might be unfairly treated by authorities is as real as it is for people with autism, and when fear and worry make it especially difficult to communicate without hyperbole, it hurts for "friends" to attack you for saying things in a way they find overblown.
And, as someone who taught English for many years and studied rhetoric at the graduate level, I find Kim's critique odd. She calls the rhetoric used by ASAN inflammatory and sensationalized, based primary on these two sentences:
Will you help us stand up for disability rights?
If approved, this new coding promises to label hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment.
In order to offer a meaningful critique, you need to understand the genre the author is working in. I do not find those sentences inflammatory or sensationalized at all-- using the correct standard of other change.org petitions. This is what Kim would have had the author do instead:
Rather than reacting in a knee-jerk manner, why not approach this from a rational, evidence-based perspective, asking that the CDC operationalize the definition of wandering (which would have to happen for it to become a diagnostic label); conduct better research into the number of individuals in institutions and group homes who wander, and the number of children with ASDs at home who have wandered; and make safeguards to ensure that a diagnostic label of wandering will not result in unnecessary restraint and that individuals' autonomy will be respected?
Because, Kim, this is a petition asking for political action, not a research paper.
And she has a different standard for people with autism and people, like her, who have kids on the spectrum. In her second post on the matter, she quotes Wendy Fournier making this statement about Ari Ne'eman:
His arguments for self-determination are unfounded and prove that he has no understanding of individuals who are severely affected by autism - and no desire to protect them from harm.
Kim doesn't distance herself much from this statement, either, noting only that she doesn't think Ari needs to be removed from the IACC.
So "Stand up for disability rights" is over the top, but a direct statement that someone does not care about kids with autism is fine.
Kim is free to disagree with the petition. What bothers me is her willingness to attack people with autism for using strong language but tolerating it in parents of kids on the spectrum, who do not have impaired communication, but agree with her. That's not right.
And, in a week that brought the Guardian's article on the Judge Rotenberg Center and the Washington Post debacle on Neli Latson, it's strange to me that people who are worried about being unfairly restrained are what is making Kim so very, very angry.
I have more important things to be angry about.
Update: Kim has clarified her feelings about the Wendy Fournier quote with these comments:
* (from the quote from Wendy Fornier)-- An individual on the spectrum suggested that I should have been more direct in my condemnation of an attack against Ari, in this sentence. I thought I covered it sufficiently in my paragraph following it, but lest anyone think I condone the idea that Ari is heartless or otherwise unconcerned with those most severely impaired, I do not. I repeated the entire quote here because I did not feel censuring the response was appropriate. Readers can make up their own minds.
My concern here is that the petition by ASAN is not based on evidence and is intended to be hyperbolic and inflammatory. It could have been more soundly argued that the CDC should be careful in its considerations regarding wandering and that the definition, if it is added, be clearly operationalized. I thought I made that clear, but well, it's easy to lose that point in thousands of words.