Whose Planet Is It Anyway?

Sunday, March 12, 2006

The Horde in Hiding

Back in the days of slavery, there were a few black activists in the United States who spoke out against the oppression of their people, such as Sojourner Truth and Frederick Douglass. They were often dismissed as frauds without any genuine thoughts, as puppets of white abolitionists who were putting words into their mouths. Because the vast majority of blacks at that time were uneducated and illiterate (in fact, it was a criminal offense to educate a black child in several states), these accusations were widely believed.

Autistic activists have been described in similar terms, as Ballastexistenz and others mentioned in response to my last post. According to the twisted views of Lenny Schafer and others of his ilk, anyone who is capable of expressing an independent opinion can't really be autistic.

And I have to wonder: How on God's green earth can Schafer or anyone else get away with such arrogant bigotry in the 21st century? Unlike the slaves, who had no means of speaking for themselves, there are literally millions of autistic adults in today's world who have access to the Internet. As Autism Diva recently pointed out, we have a million autistic adults in the United States alone. Granted, not all autistics have Internet access or the ability to write well enough to take part in advocacy efforts, but a significant number of us do. Where are all the autistic voices that ought to be screaming bloody murder about what is being done to us?

I can understand staying in the closet in real life. I am one of the horde in hiding myself; I don't have an official diagnosis on file anywhere, and I don't talk about autism in the workplace. Although I'd like to think that my management would be enlightened enough to continue judging me on the quality of my work, I am not nearly as trusting as to gamble my job on it.

But there is absolutely no excuse whatsoever for not speaking up online, to the best of our ability.

The Internet is the most powerful tool for fighting oppression in the history of humankind. And what are many of us doing with it? Playing video games, looking at pornography, and otherwise indulging in pointless escapist crap, fiddling like the Emperor Nero while our future goes up in flames.

Now, I like video games as much as the next person, but you don't stand around playing a Game Boy in the middle of a battlefield, and that is where we are. I have made this point before, and I'll say it again: If you don't have an autistic advocacy website or blog, go and build one, right now, this instant. No excuses. And if you have one, build another, or several more. It's the only way to stop the genocide.

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  • Well said.

    By Blogger Joseph, at 11:26 AM  

  • Hi,

    Most of the autistic adults don't know that they are autistic, some of them, when they are told... lets say they go to a pysch- because they can't do something like go to the grocery store... IF the psychologist/psychiatrist/counselor knew what autism spectrum looks like in adults and IF that professional told the person, that person might reject the diagnosis.

    There are a few hundred "Aspies" some of whom really easily belong in the "autie" category by DSM-IV standards... in online groups like "Aspie Hangout" on Delphiforums and "wrongplanet.net" and what is it? Aspergia or something? There are a few Yahoo! groups. But very few are really promoting anything like writing letters to editors, that sort of thing.

    Aut Advo (Yahoo! group) is the only one that really tries to get autistics to speak out against the things like prenatal testing, etc. It's not only about that kind of stuff, but I've never seen or heard of another place where someone says, "Hey, this is wrong! I'm going to write an email to the president of that University (director of that organization) and tell him/her it's wrong... here's his/her address if you want to write to him, too" That kind of action might be more effective than building a blog, though building a blog is effective in it's own way.

    Maybe more autistics will "come out." I happen to be "out" in a big way. I have "autistc" on my license plate, but my "boss" doesn't know I have an AS dx, unless he knows what it looks like (he's a social psych professor). One of the best things we can do is talk about autism in our everyday lives as if it is the greatest thing, because it is. :-)

    By Anonymous Camille, at 6:26 PM  

  • Correction...

    ANI-L and I think there's another really "old" autistic group, might do the kind of thing you can see on Aut-advo, too. It's just that I don't usually hear about anyone but folks from Aut Advo actually advocating. I'm not on "ANI-L"

    By Anonymous Camille, at 6:31 PM  

  • Well, I am one of the so-called "hidden horde". (I guess I'm the curebies' worst nightmare: I am one of Mark Blaxill's "geeks [who] got lucky" and married, who brought another autistic child, my son, into the world.)
    I am involved in ANI, and in the Asperger's Association of New England (one of the few mainstream autism organizations I know of that is by and large aligned with the goals and perspectives of autistic self-advocacy); I have done some autistic advocacy writing and speaking, and will be involved in Autreat 2006 and in three programs at ASA 2006. With a full-time job unrelated to autism, and parenting duties, I don't have the time to write frequently enough to maintain a blog. But I am doing what I can.

    I think a critical issue preventing more of the "hidden horde" from coming forward is stigma, and the potential negative consequences of disclosing a diagnosis.

    We have to push harder for the destigmatization of autism. Instead of drawing dividing lines between so-called "low functioning" and "high functioning" autistics, we should be insisting on the *continuity* of the spectrum, and pushing instead a distinction between autism per se (autistic ways of sensing, thinking, feeling, and being), and *handicaps* concomitant with autism, and getting people to focus on mitigating the latter while accepting the former.

    This will require a bottom-up, grassroots approach, working to grow a network of parent and professional allies, but I think that over time it is definitely possible to bring about.

    By Blogger Phil Schwarz, at 10:04 PM  

  • Phil;
    Why don't you chelate yourself and your kid? Then you won't have a diagnosis to worry about.

    By Anonymous Anonymous, at 12:41 PM  

  • Did I just hear a familiar buzzing noise from a not-so-anonymous pest? Sigh.

    Someone pass me the flyswatter.

    Phil and Camille, I agree that there are other kinds of useful action besides building websites and that everyday conversations are important, too.

    The Aspergia forum is closed now, but Aspies for Freedom has letter-writing campaigns sometimes.

    By Blogger abfh, at 12:57 PM  

  • I don't know I'm autistic. Maybe I lost myself. Maybe my professor will find me. Maybe he'll put me back in the closet and throw away the key. Maybe I'll take some methyl B-12 and I'll find myself.

    By Blogger Autistic Diva, at 2:15 PM  

  • John, how many of these ridiculous sockpuppets do you have anyway?

    Do they come with different clothes and accessories to dress them in, like Barbies? And a pink plastic hairbrush too?

    By Blogger abfh, at 3:31 PM  

  • Yeah, also there are probably lots of autistic people who aren't that interested in talking about autism because they are just more interested in other things.

    By Blogger Anne, at 9:54 PM  

  • Phil;
    Why don't you chelate yourself and your kid? Then you won't have a diagnosis to worry about.

    Hi John. You really do sound like a broken record.

    By Blogger Joseph, at 12:03 PM  

  • I agree with whoever said many of them probably don't know they're autistic. Others maybe haven't yet learnt to stop taking the status quo for granted and start thinking they can actually change things.
    Martijn Dekker noted that the Independent Living on the Autistic Spectrum group was about 50% female even though autistics are said to be 3/4s male. One theory I have is that someone who'se already been subject to a more socially recognized form of discrimination, such as sexism against women (anti-male sexism is still mostly ignored) or racism may be more likely to notice the similar dynamics operating in terms of how disabled people are treated. One study quoted by Not Dead Yet noted that the group of disabled people most in favor of assisted suicide were white males. My theory is that white males tend to be much more likely to take the status quo for granted than non-white people or women because sexism and racism have been widely challenged but are still around. So they get the combination of suffering from discrimination and being exposed to alternative views, which encourages activism. And activism teaches you ways of thinking, making it easier to understand the plight of victims of less-acknowledged discrimination.
    For example, I grew up knowing that people could change the world. If they noticed something wrong with the world and tried hard, they could change it. When I was young my mother took me to a statue of some women suffragetes (sp?) and I pretended to sip their tea. I sort of knew that those women had made things better for women and that's why there was a statue of them.
    I suppose some white males involved in activism could have grown up understanding sexism or racism as allies, but allies seem less common than self-advocates.

    By Blogger Ettina, at 2:28 PM  

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