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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, November 21, 2007


The Media Does Not Convey The Whole Message

As many of you know, Amanda Baggs and many people at the AutCom conference in Edmonton which was held in October, will be on CNN this Friday night on Anderson Cooper 360. The shortened version aired Monday night and you can read the transcript here. I am interested in the way people construe meaning. TAAProject has heard from more autistic people as a result of the broadcast. It has also received calls from people who want to "heal" those they saw on the broadcast (which of course would be offensive to those very people who were on CNN). It is the nature of the media beast, of expression and art itself: what one sees and hears is a result of one's own experience and the challenge is to study and stretch beyond ourselves (the proverbial "comfort zone"). Please read Amanda's post on her feelings about the broadcast.

I am concerned for autistic people who really put themselves out there for the purposes of getting out the message. It's a Catch-22 situation. If you are visibly disabled, you are discriminated against or receive the insult of low-expectation. If you are "functional" or invisibly disabled, you are questioned or treated with disdain and do not receive the understanding you need in order to be able to contribute. People have a hard time understanding autism in the way of dissonance of skills --be it in "doing something" inconsistently, or even verbalizing.

Despite all this, I want to say that I am really am grateful, because I am beginning to understand how frustrating it really is. Communication is already challenging for many of us, never mind jumping over such strong stereotypes that are deeply embedded in our society. While television can be important to get messages out, the work behind autistic civil rights (in the way of the writings and contributions of autistic people) is even more so. The media cuts and edits dialogue, extracts meaning, and it gets filtered or interpreted in ways not always intended by the person being interviewed. The purpose of many reports is to produce a general message for public consumption. Sometimes it is meant to sell papers and acquire viewers through sensationalism. We know that the messages that come out can be whitewashed. There is nothing simple about human or autistic experience, and the media tries to distill it for the simplest message, which is not always fair.

We've all heard that the grade level required to read the average newspaper is quite low. I found this blog "Common Sense Technology" that suggests that newspapers are written to the 3rd grade reading level. Adam will soon out read us all (he has been reading since 11 months of age and he is only 5 1/2). Seriously, just think about how simple the arguments have to be! It is important to read outside of the newspapers and what gets portrayed on television and it behooves us to "question everything." For instance, I let others know that the piece would be on on Monday night. I received emails back asking, "is this an accurate report?" That is the right question!

Still, while activism doesn't happen as frequently on Capitol Hill or Parliament Hill, it has ended up on the Internet, and the media does a great deal to send out messages to a larger public. That said, the media and the public are still learning (some might disagree saying that many reporters never learn -- Margaret Wente's report this past year in the Globe and Mail on autism was most definitely an ill-informed piece of journalism and did not "show two sides of the story." Sadly, it is not an individual case of sloppy journalism). As a parent, I keep learning about the community to which my son belongs, and I want to stand beside him. That means I want to stand beside all autistic people, for they continue to teach me so much and I also stand with parents who are open to learning from and assisting their children.

There ARE journalists who are really getting interested in the more complex story. I wish to encourage a Pulitzer Prize-winning one! Why not? Do autistic people not deserve it?! What about an article to discuss disability rights and culture and perhaps autism as the newest disability to be confronted with extreme bias that is at the ever-confusing ethical crossroads with bioengineering and Neuroscience -- that parallels with questions of how much a society should enhance itself? It should be written by an autistic journalist, but can be attempted by a non autistic one if the perspective (and inherent bias) are qualified.

For certain, opening up one's life is really difficult. So much vulnerability and the discrimination is ever more apparent when it gets met with such hostility, disrespect and utter naivete from some people. I look at it this way, if one is open to listening and learning, and keeps being open to confronting their own bias in order to understand before just discounting the perspective of the autistic person, then the learning has just launched.

I keep thinking of how much gratitude I have for the people who continue to go out there in the face of such adversity, because I really can't come up with any other way than to open up in the face of it. Adam's opportunities have been built on the backs of autistic people today and who before them came people like The Rolling Quads at Berkeley, and many other people in our disability rights history. Ed Roberts, a quadriplegic who ended up becoming the chief of The Center for Independent Living -- an agency that "a decade and a half earlier had deemed it 'infeasible' that he would ever hold a job.'" He had a son, Lee, and later "underscored the silliness of a system that tried to write off people based on the severity of their disability." (Shapiro: No Pity: People With Disabilities Forging A New Civil Rights Movement,p. 54-55). The events at Gallaudet University and the protests that lead to the appointment of its first deaf president I. King Jordan, were significant that lead to the Americans with Disabilities Act just two months later. There are tremendous acts of courage and perseverance, in addition to these events, by many other disabled individuals of all "functioning" levels and "severities."

Many people do not even realize that the opportunities they have for their autistic children today exist because people with disabilities fought, through adversity, for the very rights we are beginning enjoy. Yes, we still have a long way to go, but at least we have a path to go there and I do not want it gated. Organizations forged by parents typically "[aroused] the public's fear of the handicap itself" (Shapiro). In the case of the Muscular Dystrophy Association's telethons, for instance, "the telethon makes viewers more afraid of handicapped people" (Shapiro, pp. 21-22.). We witness the same "marketing of fear" today in our own autism organizations lead by non autistic people, who put autistic children as "poster kids" in order to call for the prevention of autism while ignoring the adults. I hope for a day that non autistic people work with autistic people without talking and advocating over them. I write this because don't you know the saying that we teach others what we most need to learn? Michael Moon will soon become our new TAAProject's (The Autism Acceptance Project) President for this very reason. Brian Henson and Martine Stonehouse have been activists in their own right prior to the incorporation of The Autism Acceptance Project and we are lucky to have them on our board.

Some parents currently attack our autistic members of society as being "not autistic" or not "having the right to speak" because they are "higher functioning" than the children they have. And yet, people with all kinds of disabilities, and severities of them, have fought for many years so that our children do not end up in institutions, or can go to community schools, and have access to special services and accommodations.

Perhaps this is what we might keep in mind when the next show will be aired, the next newspaper report published. The media is watching and listening and learning. I encourage all autistic people to hang in there and continue so that no one speaks on behalf of you, for no one should and no one really can.

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Blogger Casdok said...

It is catch 22!

12:05 PM  
Anonymous -Brian- said...

In Ontario, with the new lieutenant-governor David C. Onley, being an avid supporter of persons with disabilities, I am hoping that he can be one of the catalysts for change in the media. So far, he seems to be getting a few words in as far as access for persons with physical disabilities that affect their mobility (such as ramps and door accesses), but I have not heard any moment towards persons with other disabilities, especially the invisible disabilities.

Recently, a ruling in Toronto forced the transit system to announce transit stops for those who are visually disabled, which is one step in the right direction, but it will take more than just a few steps to get down that huge path towards persons with or without disabilities having the same rights and respect in all areas.

Society still seems to cringe on the idea of those with social disabilities being treated equally, let alone with respect; it's as if everyone is saying that old cliché, "If you want respect, you have to earn it!", and then setting up their own rules for what can or cannot be done, behaviourally, to earn that respect. That only creates more disrespect and isolation. Those with social and verbal disabilites are often at wit's end as to who to turn to, or even what to say or do under such duress (in the home, school yard, classroom, store, gym, or wherever they might be). Just telling that person to "behave yourself!" is like telling a blind person to see with their own eyes--an impossible task, to say the least.

Therefore, for those with invisible disabilities, getting through to others is often like getting through a brick wall of "shoulds" and "shouldn't" when just mentioning those words (or "must" and "must not") only adds fuel to the existing fire of despair and isolation.

That's where trying to get the full meaning of empathy through the media, not just for hype, but for a depth of understanding that not one article or TV show could come close to, in human interaction is so imperative. It will take many shows, many articles, and much input by those with invisible disabilities to get the word out, but, eventually, it will "sink in", and society, some day, will feel that "ah-ha" moment, when that depth of empathy for those with invisible (as well as visible)disabilities will be felt overwhelmingly by the masses.

In the meantime, we have one major tool which was not available thirty years ago--the internet, and that tool can be one of ur major assets in building that equilibrium towards the truth being presented in the media as far as what our needs are as person with visible and invisible disabilities.

1:08 PM  
Anonymous farmwifetwo said...

If you want something badly enough, then you have to stand up and be noted. Even if you get slammed. You have to learn to not take it personally. From Dr. Temple Grandin, to Stephen Hawking to Christopher Reeve... all stood up and are taken quite seriously.

I appreciate not everything is accessible. But if you don't stand up and say "Why not??" or ask or tell (not be defensive but explain and show) someone, it never will be. Change doesn't come yesterday but there's aways tomorrow. Also, you have to view it from both sides of the issue. Telling someone which stop you are at and putting it in words in a bus (it's in London as well) is an easy fix. For a little shop to put braille on all it's prices or teach all of it's employees sign language, is not possible nor feasible. Gotta give a little and get a little in exchange.

But those with disabilities should also expect to have to have the same levels of education and ability to do a job as those without. When I got out of Univ in the 90's, if you weren't black and female you couldn't get a job. I don't wish to be passed over b/c someone has a disability and less education/training than I do. In today's competitive, global market place... that's the way it works. Now if all you wish to do is wash dishes in a restaurant, flip burgers, sweep floors etc... those lower skilled positions will always be there.

Sometimes please, thank you, give/take a little and keep your end of the bargain (for me it's tutors, gym, speech, Scouts, library programs etc outside of the school system)... go a long ways to having yourself (meaning my children) taken seriously too. They can't be ignored if they are learning, socializing and in their small way... breaking down the barriers.


2:00 PM  
Blogger Patrick said...

Thanks for your continuing work Estee!

12:46 PM  
Anonymous Ballastexistenz said...

When I got out of Univ in the 90's, if you weren't black and female you couldn't get a job.

That's not only inaccurate but damagingly so. Black women have never been overemployed at the expense of white men, black men, or white women, in the history of Canada or the USA. Just as disabled people have never been overemployed at the expense of able-bodied people. Repeating racist/ableist/etc stereotypes of the underqualified 'minority' driving all the qualified members of the 'majority' out of work does not help anyone at all.

In addition to that, while it's often necessary for various people to fight for our rights, phrasing it the way you did could potentially be read as meaning that the problem of people's rights being taken away is caused by people not fighting for them enough. Which is backwards logic.

4:20 PM  
Anonymous Anonymous said...

In the 90's there was a HUGE push in Ontario to have certain ethnicities in certain positions. ESPECIALLY within gov't positions.

And... it's true. It's eased since... but for a while every job application had on it "you don't have to, but if you wish please note your race/religion". By law they couldn't demand that you did it... but if you didn't... you weren't offered an interview.

It wasn't right... never claimed it was... but it existed. And to add a qualifier of disability to applications and therefore have a certain # out of a certain number of non-disabled persons... is IMO a way to upset people and not gain their support.

I want my children hired on their skills, not their disability.


10:28 AM  

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