Before I write more about this, I feel compelled to share a couple of things in the interest of full disclosure.
First, I am a survivor of childhood hydrocephalus and have a neurological profile that fits what is called nonverbal learning disabilities (NLD). There’s enough overlap between NLD and Asperger’s that many workshops and groups lump them together as “spectrum disorders.”
Second, I am a fan and supporter of the Autistic Self Advocacy Network (ASAN). I consider Ari Ne’eman, president of ASAN, a friend.
Over the past few years, ASAN has risen in prominence in the disability rights community – and in terms of the media. This is due, IMO, to the group’s political savvy, clear message, and a message of realistic hope to individuals with autism and their families.
In brief, ASAN and its supporters in the neurodiversity movement advocate an alternative to the “cure or stomp every trace of difference out of the individual approach.” (Note: these are my words, not those of ASAN’s) They believe that every person with autism or other neurological condition can have a good life, with the right supports – and that the world can become a less hostile place for those who are different.
If you think the topic is a little out of the way for NDY, think again. Three-year-old Katie McCarron was killed by her mother in 2006. Katie had autism and court testimony revealed that Karen – Katie’s mother – wasn’t happy with any progress her daughter made. In fact, nothing short of Katie somehow being “normal” would satisfy her. Obviously, the vast majority of parents of kids with autism don’t kill their kids, but some who do are in that unrealistic and dismal place that Karen McCarron was.
The current storm was triggered by the news that Ari Ne’eman and the neurodiversity movement is to be featured in this week’s Newsweek.
On the popular “cure autism” site, Age of Autism, a response was made by a college student with Aspergers who disagrees with the neurodiversity movement in the form of an “open letter,” and contains some familiar moves:
- He complains about the lack of a dissenting voice, ignoring the immense ammount of unchallenged coverage that the “autism is a curse that must be cured” has received;
- He mischaracterizes positions promoted by the neurodiversity movement;
- He relies on his individual voice serving to nullify the collective voice of a growing movement.
All that is mild, though, compared to the posts on “Hating Autism” (and everyone who has it, apparently). The blog is written by John Best, who writes by the name “foresam.”
His reaction to the news about the Newsweek article was to write a blog post titled: Ask Newsweek to Kill Ari Ne’eman. To be fair, the post itself refers to “killing” the article:
I hear that Newsweek is going to run another article allowing the sadist, Ari Ne’eman, to lie to the world about autism. Before that comes out, I think it’s useful for sane people to ask Newsweek to kill this article, or, at least allow us equal space to tell the truth about the horror of autism.
But John Best doesn’t end there. The really disturbing, creepy, scary and violent part comes in a comment he submitted later on:
I believe that everyone associated with Neurodiversity should be put to death for the propaganda they perpetrate against curing horribly disabled children. They are part of the lies told by vaccine makers and politicians who continue to cause autism intentionally.
I believe that autism is the greatest crime in the history of the planet and that anyone who has been involved with it in any way deserves to die, preferably slowly and with great pain. So, while I don’t suggest that anyone should shoot Ari Ne’eman in the head, I do think he deserves a trial for his role in this atrocity. I hope the outcome of that trial would be death.
You know, if I ever wrote anything remotely this incendiary about pro-euthanasia people – or even the Final Exit Network “special forces,” I’d be vilified by foes and allies would find various ways to distance themselves from me – fast. My guess is that this won’t hurt John Best at all and may even increase his support. Hate, like misery, loves company.
For more outrage, and a constructive way to retaliate, please check out Turning Trolls Into Stone at Whose Planet Is It Anyway?
Later today, you can check out my personal blog for some more discussion of the “cure” issue and my personal take on it. –Stephen Drake
Drake, if there were a cure you would be at the front of the line to receive it. I have autism and probably NLD also, I long for a cure. Why can’t newsweek tell our side of the story also, what’s wrong with that?
jonathan,
Don’t assume you know what I would do. Life isn’t easy, but it is full, rewarding and interesting for me. I suspect that a lot of what I do – the way I analyze situations and media, for example – is actually enhanced by that hodgepodge of atypical neurological skills. I cannot for the life of me imagine what could possibly be gained balanced against those things that could be lost.
I’m glad you are an advocate of “balance” in an article. Does that mean every time Jenny McCarthy is on a talk show, you’ll demand someone with another viewpoint get equal time? Will you demand that the next time an article is devoted to mercury fanatics (Karen McCarron was one), you will *demand* there be equal representation from people exposing the mercury claims as junk science? (and calling it science of any kind is generous). –Stephen Drake
Thanks for the link Stephen, much appreciated!
It never ceases to amaze me when people “know” how I would respond to a cure. That’s a highly personal and probably dynamic fact that NO ONE will “know” until/if it ever happened…Still, I think it’s offensive for others to proclaim what I would do.
Now back to this story…It’s so disturbing what this poster has written, but also indicative (in my opinion) of their high level of rage and irrationality when talking about this topic. I feel badly for Ari caught in the crossfire and hope that the controversy brings some positive light to the issue and the PEOPLE involved.
abfh,
You’re welcome. My general policy is that when someone has what I think is a good idea/insight/article, I send people to the source. Like most blogs I’ve linked to, yours is worth people checking out pretty much any time – this was just a good excuse for sending people there. 🙂 –Stephen
Kara,
it’s true people don’t know until it happens, but I really have trouble wrapping my head around the concept to begin with. “Curing” my disabilities would mean rewiring me – since I kind of like being me, I am not inclined to view changing that as a good thing.
As for the irrationality and rage in John Best’s posts, he brings them to a new level – but they’re not really new in parent-run autism advocacy circles. I had involvement with some of them back in the early 1990s – it’s parents of children with autim, mostly, who keep Matt Israel and his House of Horrors alive (shock devices and all).
stephen, you’re a rockstar.
But Stacey, I don’t even play air guitar. –Stephen
I just don’t understand the cure or else view, if my boys were “cured” then they wouldn’t be themselves anymore. Wishing for a cure for them seems like wishing for different kids, and I don’t want different kids. I love them and enjoy them just the way they are.
I enjoy traveling the links. Very much enjoyed my visit to cripchick’s blog. Gosh. Maybe someday I can (blog).
Stephen- at one time we had a federal law called the fairness doctrine which allowed people to do just what you said. We don’t have the law anymore, but some in congress are trying to bring it back and it may come back at some point. It applied to radio TV, FCC licensed outlets, i don’t think to print media.
Newsweek is under no obligation, legal or otherwise, to tell our side of the story. However, I feel our side of the story should be told. I think it is interesting, worth hearing about and there is someone out there (not necessarily me) who could refute everything ari says and newsweek’s readers would find it interesting, and they would do better for it.
jonathan,
Until very recently, “your side” of the story was just about all that was heard about autism in the media. I didn’t hear any of you saying there should be some dissenting voices in the coverage back then.
You should know you’re talking to the wrong person if you’re trying to get sympathy. I suffered through the disgusting display of autism “advocacy” groups exploiting the murder of Katie McCarron as a way to talk about the “toll” of autism on parents. These “advocacy” groups abandoned the grieving family who loved Katie – the father and grandparents who begged them to stop exploiting her murder – basically blaming her murder on her autism.
Maybe to make up for the past media coverage, an interview should be published asking Mike McCarron about the tragic consequences of a woman who wouldn’t accept her child for who she was.
I’m Aphasic. I find the fact that anyone would even *joke* about putting anyone to death for their beliefs is obscene. I believe that Neurodiversity is incredibly important. “Normalcy” is just a hurtful myth.
Not Dead Yet,
When you learn what being rational means, I’ll let you know. Until then, it would be best if you shut your ignorant mouth and paid attention to those of us who do not suffer from thimerosal induced brain damage.
I can expose the fraud in every single word uttered by everyone associated with Neurodiversity. Sometimes, as I believe is true in your case, the idiocy that spews forth is a result of brainwashing. Ethical and educated people such as I can help you resolve that assault on your brain if you will recognize our benevolence and accept the fact that our exposure of Neurodiversity’s mind controlling propaganda is an effort to help you, the victim.
Thanks Stephen!
I’m sure I wouldn’t trust anyone who said they had a foolproof definition of what is “normal” anyway.
Seems the pot calling the kettle black. If anyone exploited Katie McCarron’s murder to further their agenda, it was the other side. Claiming that this is what the desire in a cure results in with various members of ND claiming that those of us who want a cure were somehow responsible for her murder. Even Nee’man himself was not above the fray, declaring that autism speaks was somehow morally complicit with murder of autistic children.
I recall no dissenting voices in the sense that they were autistics who want a cure being presented in the media. I am about the only exception to that rule that I know of having one paragraph devoted to my anti-neurodiversity article in the New York Magazine article of several pages. Nothing wrong with giving your beliefs publicity in the media. I just feel i should tell my side of the story as well.
jonathan,
normally, I wouldn’t bother posting this or replying. But I am making an exception in your case, because this is also your last comment on this blog.
You said:
If anyone exploited Katie McCarron’s murder to further their agenda, it was the other side. Claiming that this is what the desire in a cure results in with various members of ND claiming that those of us who want a cure were somehow responsible for her murder.You are either totally ignorant of the press coverage that dominated Katie’s murder in Illinois or being deliberately dense. In the case of Katie’s murder, neither is excusable or acceptable.
For your information, spokespersons of the Autism Society of Illinois and the ANSWERS “support” group took the opportunity repeatedly to say that Katie’s murder was consequence of the “stress” of autism and lack of supports. It got bad enough that it provoked this comment from Mike McCarron, Katie’s grandfather:
“When I see the lead in line “I don’t approve of murder; but…” I just have to buckle my seat belt because I know, here it comes. The advocate goes on to virtually admit it is OK, or understandable because Katie had autism. If these people are “advocates” for people with autism I can’t imagine what the “opponents” must be like.”Or maybe you see Mike McCarron as exploiting the situation? It doesn’t matter.
Your comments are no longer welcome here. Add it to the long list of things that you think of as unfair.
Darnit Stephen! I was just going to ask him to post links to prove his accusations.
Dear Bob,
It seems that today is one in which I am destined to spread much disappointment. There is more to come. –Stephen
To Foresam or John Best,
If you’d bothered to do a little digging into the nature of my disabilities, you’d know that they are identifiable. Doctor-induced head injury at birth.
But that’s not really the point with you is it? This is entertainment for you. I hope that whatever you get out of playing the bully online results in some benefits – like maybe sparing your loved ones from verbal abuse or worse.
I know that you love finding new places to play. This will not be one of them.
Your first comment on this blog is also your last one.
I don’t give a flying crap what you think about it or what you say. Most of the readers of this blog have little or no interest in neurodiversity issues and aren’t interested in anything you have to say.
Good luck finding other playmates (or people to bully).
You know, for every person who reads the Hating Autism blog and clings to its hatred, there will be many more people who are turned off from it, and a few who end up finding… by looking at the links he characterizes as “nitwits” and worse… great resources, noble organizations, and blogs like yours.
It’s funny to me how one the blog posts on Hating Autism decries Jenny McCarthy and claims that people like her are propped up to discredit people like him… I don’t think he needs her help.
He’s seriously scary, though. I’m kind of glad to know he regularly harasses federal law enforcement officials with his complaints, because it means they have a file on him.
Oh, and now that I’ve read the comments, I have to second what Kara says. Someone who looked like me and had my memories but had different brain wiring/chemistry wouldn’t be “me” at all.
The very idea of something like that is the basis of a whole genre of horror stories.