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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, April 19, 2006

 

The Blog and Human Equality



This post has been written for Successful Blog and Outstanding Bloggers.


Autism is classified as a neurodevelopmental disorder that manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behaviour. Most notably, autism can make it very challenging for a person to converse in real-time, which can make face-to-face conversations and debates difficult.

Currently, in autism discourse, there are two distinct arguments occurring online between those who feel autism is an illness that must be cured – conducted largely by those without autism -- and then those who are autistic and their allies, who believe that autism is a way of being and that autistics have a right to be respected and supported within society – an issue that deserves the same regard as race, colour or creed.

Thankfully, the blog is an equalizer of humans, serving the autism community well at this point in time. It is a universe, a “sphere” without rules, without barriers – faceless, sometimes nameless. It transcends some physical and attitudinal barriers and in this realm, one cannot judge another based on appearance or so-called levels of “functioning.”

In years past, self-advocacy by autistic persons could not be as prevalent as it is today. If it was, people with autism would have to be edited and published – by and large not a bad thing. Letters have been written, but without the dialogue and the breadth of interaction the blog invites. With current media “hype” over autism, people with autism take offense and can advocate in public, through the blog. In fact, the blog is a powerful medium for the autistic person because, as mentioned earlier, communication difficulties that arise from delayed processing make real-time dialogue difficult for many, impossible for even more. With allowed time and space to communicate, the autistic person can self-advocate more effectively online. I direct you to Part Processing, Whose Planet is it Anyway?, Ballastexistenz, and Michelle Dawson’s website “No Autistics Allowed,”to name only a few (the rest you can view on the right side-bar).

In an email exchange with Michelle Dawson, she told me that it takes “extra time” to write emails. “Zilari” of Part Processing makes a number of comments on her processing time with colleagues at work:

“This is the main reason I prefer reading to listening. I like huge blocks of text I can sift through and find the relevance in. I like how text stays firm within time and does not melt away like sound. I like how reading does not demand every 30 seconds that one speaks to the text aloud and says, "Yes, I'm getting it, carry on!…"

It takes different brain functionings to type, read and write than to speak – some have pointed to Broca’s area and Wernicke’s area (the left frontal cortex and the posterior part of the temporal lobe) that have effected aphasia in some. It is widely known that “written language is often much more convenient for processing large amounts of linguistic data.” Verbal communicaton may be the sine qua non of childhood development measures, and of pragmatic communication (socialization) in this society, but with the advent of the blog, many barriers for the autistic person just mentioned have been destroyed, thus allowing others to discuss issues with each other – not only between those with autism, but with another population that didn’t have day to day access to this population. Parents like myself can listen to autistic adults which can then guide interactions with our own autistic children. Autistic people, judged all too often for their exterior “behaviours” or functional impairments, or romanticized because of their literary, artistic or other exemplary work, can be viewed as intelligent, “regular” beings deserving and desiring a quality of life beyond cures, therapy or daily physical care. This even-playing field enables people with autism to discuss what autism is, thereby demystifying the so-called “disorder.”

When writing, an autistic person can experience inertia. Blogs enable time to pass without further handicapping the autistic person to communicate when the will to do so is fluid:

“Some people find it difficult or impossible to summon certain ways of thinking on demand. For example, some people have a lot of trouble getting into an "essay-writing mode" - they'll get out the assignment, open up the word processor... and then sit there blank, unable to figure out how to begin. For another example, some people get easily caught in a given emotional state - frustration, say - and are unable to get out of it on their own... Lucy Blackman writes, in her excellent autobiography Lucy's Story: Autism and Other Adventures, that she has trouble getting her thoughts into the stream which effects what she actually does, unless she's had time to type it out before hand.” (From Theory to Praxis)


Blogging and email communication are invisible, fluid highways to change the face of rights and acceptance of autistic people as thinking, vital human beings and further, raises issues about how we treat disabled members of society as a whole. Michelle Dawson, banned from Autism Society of Ontario’s listserv , and Jim Sinclair who writes the article Don’t Mourn for Us, among many others, have created a dialogue on such an equal footing that so-called altruist seems assaulted and on the defence, remaining stubbornly rooted in some false-belief that the autistics are wrong about themselves -- that autism is a tragedy despite what the autism community (people with autism) say. As I noted in a post titled The Economy of Pity: “altruism exists largely for oneself, not others.” People are unaware of the pity they disperse and the autistic community doesn’t want that pity. Pity suggests that there is one who is superior over another. Society is forced to contend with the likes of Dawson because of her ability to write, for example, and her arguments about autism research and treatment in society. Society, in turn, brushes her aside only to spotlight the discrimination even more. Other people with autism and their allies, are able to discuss news events and issues about autism and rally behind the likes of Dawson and the acceptance movement, thereby taking the revolution off the streets and into the information superhighway.

So, the autism discourse has become political – with demands for basic supports, respect, tolerance and inclusion to a society who largely hears from mainstream media that autism must be cured, therefore assuming that autistic people have a lower quality of life because of their autism, and who see autistic people as inferior beings. Cures seem to come from camps wishing cost-effectualize the human race, inauspiciously reminiscent of the former eugenics movement in America. People with autism and parents like myself, are frustrated and outraged with the messages that mainstream media is purporting.

Bob Wright, Chairman of NBC, and his wife Susan, decided to take the hyped “epidemic” message and run campaigns over the media because of their recently diagnosed grandchild. This family, who personally believe that vaccines have caused the autism , are personally funding, and fundraising, for research to find out if thimerosal, the claimed offending preservative, is the cause of increased autism diagnosis’. They began a charity called Autism Speaks and have coupled with The National Alliance for Autism Research (NAAR) in rallying for greater funding on this basis, even though the science has already disproven that vaccinations have been the culprit, or the cause of autism. Kevin Leitch, web designer of Autism Hub that has brought "the best of autism blogs" together, exposes Lenny Schafer's opposing views about mercury in vaccines. Many autism bloggers committed to uncovering rigourous, peer-reviewed science, dedicate their time to disproving these claimants, who unfortunately, have a large portion of the public ear, not to mention access to deeper pockets. These bloggers: Kathleen Seidel, Autism Diva, Kevin Leitch, Bartholomew Cubbins, Michelle Dawson, and many others, have spent countess hours on legal and scientific matters that are now shaping mainstream messages and court cases – the latter from parents suing based on thimerosal in vaccines.

The call for altruism to corporations and high-ranking political figures like Alan Greenspan and Laura Bush, are so misguided – as the funding and the goal is being disputed by autistics and is nonetheless disregarded, furthering ghettoizing the autistic population. This shows the special interests of the media and the lack of objectivity, just when the public turns to the media first for some kind of truth. It is the highest abuse of the media, and bloggers are largely motivated by conspiracies, special interests, and abuse within trusted institutions in general. As a former corporate chair of NAAR, I was shocked at the organizations' apparent disregard for autistic persons and their message when I suggested that people with autism should be directing the research and the public messages – not researchers and parents. This obvious disregard is a slap in the face to the autistic population.

The blogging movement is thankfully more democratic showing a widespread public dissatisfaction with the media, politics, and many charitable organizations. David Kline, who writes in Toward a More Political Democracy – an excerpt from the book Blog with Dan Burnstein says, “Any serious discussion on political blogging of course, must begin with an examination of how it has reshaped the way in which Americans get their political news and discuss the political controversies of the day. Because on that score, at least, political blogs really have become, in the words of Time magazine, `a genuine alternative to mainsteam news outlets, a shadow media empire that is rivaling networks and newspapers in power and influence.” (p.5)

In this “citizen-created medium,” people with autism and parents can tell it like it really is. Blogs are devoid of editors and special interest groups who control mass messages about autism -- messages crafted by those who are not autistic. Some autism groups have garnered their energies as in Aspies for Freedom, using a critical mass of autistic people to ensure the message of acceptance of diversity is spread. Kline further states that, “This is not the first time citizens have created their own media…During the Renaissance, for example, `commonplace books’ helped educate citizens cope with the information overload of the newly emerged printing era…these commonplace books reflected personal experience and conscience of their authors.” (from Blog! P. 245).

Recent changes in the thimerosal argument by bloggers and the Schafer letter will hopefully kill the myth that vaccines cause autism, showing the power of online discourse. “The results are in. Without blogs, there wouldn’t have been a Drudge Report to help speech the impeachment of a sitting President. Trent Lott, hounded by bloggers for a racist remark originally ignored by big media, would still be Senate majority leader. Blogs played a critical part in the downfall of Howell Raines, former executive editor of the New York Times, in the Jayson Blair scandal.” (Blog! P.369) I'm sure the autism community will soon be able to make the same claim.

The quality of blogs will be scrutinized by their audience. Bloggers will be subject to the same editorial scrutiny for fact and accuracy, or will be quickly corrected. (In fact, I am expecting some corrections and additions to this post). As autism has entered the human rights stream, I witness a similar scrutiny to a court of law. I am certain, in fact, that this online dialogue has influenced legal arguments and will definitely change public consciounessness about autism.

I’ve heard murmurings of the autistic person being unable to participate in live video-feed discourse. Yet, for centuries, the written word has been a powerful force to change the world. With allies, both the keyboard and the spoken word will move toward cultivating a tolerant society. The blog is not just a nice little cathartic diary in the autism world. It is a major movement about disability and humanity that can no longer be ignored -- no matter how hard others try.

8 Comments:

Blogger Kristina Chew said...

Email and the internet have been most valuable tools in my teaching of AS students in the college classroom. And Charlie moves ahead sloly with learning how to read in school, with ABA, with much hard work.

11:15 AM  
Anonymous Camille said...

Dr. Gernsbacher teaches an online course at Wisconsin, Madison, on autistic culture. She quotes Martijn Dekker
http://www.inlv.demon.nl/martijn/ saying basically, "the Internet is for autistics what sign language is for the deaf."

To me that is so powerful. So much of a message is sent by non-verbal communication, and many times autistics don't manage this to the degree that non-autistics can. Or if we can manage it, it's exhausting and can only be done for short periods of time.

In email, one can write something rude or incomprehensible and then think about it, delete it, start over, think about it, now it's too sappy, fix it... and end up with something that looks like very typical speech.
(you have a typo in your blog, I think you meant "speed" but you have "speech" something about impeachment).

Also, even if your message doesn't need editing, you can still take 10 minutes to get your 2 sentences out without bugging the person who is waiting for you to say it. And talking too loudly or too quietly or having a speech impediment is not an issue.... though spelling is.

I think maybe the best thing about blogging is that it is relatively cheap (not available to everyone, obviously, but free once you can get a computer and web access). Many brilliant autistics are relatively poor, unlike the Wrights and the folks of SAFEMINDS who hire professionals to get their messages into the mainstream media.

Also, it's difficult to get 3 autistics to agree, in a short period of time, on the content of anything, if only because we are all working on different energy levels, etc. Working alone, one just writes and doesn't need to confer with someone else. No one is there to discourage an idea. One must face the consequences of a bad idea on one's own ... but that's ok.

Still... it is good for autistics to try to work together, see: "the autistic adult picture project" which was crafted by a few autistics and is run by 2, but only with contributions (submitted photos and info) of many.

:-)
Keep up the good work, Estee.

12:16 PM  
Blogger Kev said...

"Also, even if your message doesn't need editing, you can still take 10 minutes to get your 2 sentences out without bugging the person who is waiting for you to say it."

One reason I really don't like IM software ;o)

2:39 PM  
Blogger Jannalou said...

I don't mind IM software. :)

But there are things I simply cannot speak. I try. I will sit in silence, or talk about other things, for literally hours and still be unable to say what is practically screaming to get out.

When this happens, there is so much pressure inside to "just spit it out" that having the person I'm trying to talk to nag me to tell them what's on my mind simply makes it worse. I experience enough distress over being unable to say things that I desperately want to - I don't need the added guilt that someone else is upset over it.

8:36 PM  
Blogger Zilari said...

I have actually seen an encouraging amount of communication lately between autistic persons and parents of spectrum children -- it seems that the Internet is indeed a medium that allows these groups (if you can call them groups) to exchange thoughts, to a degree not possible previously.

Despite the stereotype of computers being a hindrance to a person's social development, I actually find that for the most part, the sort of "monologue exchange" that the Internet makes possible is actually an incredible social resource. And by "social resource" I do not mean (at least not primarily) a device by which to be entertained, but a true agora (as Kristina writes about).

I was almost literally floored today by a sudden realization of the potential of the Internet to foster not just change, but rapid change. I feel a bit vulnerable by virtue of having my own blog -- when I started it, I really didn't expect anyone to read it. I just decided to put it out there in case of some chance discovery, like someone turning over a rock in the woods (with the appeal of or dismay at what was underneath truly resting in the eye of the beholder). I really had no idea what I was getting into, but I am very glad I "got into it" because it does actually feel as if there is potential for information-sharing to improve the world for people with every manner of brain wiring.

10:26 PM  
Blogger Estee Klar-Wolfond said...

Yes, Zilari...I'm sure many of us are glad you "got into it." :)

4:51 AM  
Anonymous Michael said...

Without question you are correct that BLOGS are a means of communication that makes it possible for worldwide access for anyone to state their opinions.

As all who read this know letter writing was the primary low cost manner of sharing intellectual, emotional and pragmatic ideas with specific individuals up to and including much of the 20th century. The only other method, before the 20th century, was the distribution of leaflets or periodicals. Such methods often had very negative and dangerous effects on society, as they frequently called for social change in a revolutionary (all too often destructive) way. While distribution of “paper messages” continues, its effectiveness and in part the cost of distribution is usually connected with organization, many of which qualify as not for profit charities. Such organizations have ulterior motives, which are not always shared by the majority and have a tendency (purpose) to steer opinion and funding into arenas that are self-serving.

Now, BLOG communication gives hope in its capacity to create a pacific (hopefully) way to share differing opinions and desire for change, acceptance and understanding. In particular, BLOGS’ ultimate equalizing effect does not discriminate between those with and without some disadvantage in society. Thereby, theoretically allowing for the creation of awareness of issues society may not fully understand or be misled. Unfortunately, the sheer number of BLOGS may diminish its effectiveness unless a group such as this can mobilize and become more visible. This may only be possible if the “traditional” communications channels are also used.
Cheers,
Michael

8:59 AM  
Blogger Estee Klar-Wolfond said...

I agree, Michael. This is important and continues to happen as bloggers who have pooled together their energies and purpose like Aspies for Freedom and many others, put forward their voice not only together, but also back into mainstream media.

9:08 AM  

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