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.

Another Autism "Story" -- Jenny McCarthy

I am in the grocery store line, and yes, I heard that Jenny went on Oprah to talk about how diet and biomed "cured" her autistic child (who still flaps by the way). "Fighting for her Autistic Son," says the People Magazine headline. My stomach clenches. Oh no, I should be used to this by now, I think. Another "devastating" article that talks about autism as a disease -- that can be cured with medications and therapies. I sigh. I reluctantly buy it -- like a compulsion. I would prefer to ignore it. I can't.

The story starts off the same. Every parent is shocked, worried, faces fear. The beginnings of our stories are almost always universal, and there is nothing wrong in stating how something effects us. But, in the article, it doesn't really stop. We see the loving pictures -- son and mum look happy. Is this to show that you can love your child and still hate autism? Or is this to show that her son is "cured?" I am cringing while reading the saga, and the way its told -- could be People Magazine's fault in part. It is a gossip magazine, after all.

But here's where it really got to me. The interviewer asks about her relationship with Jim Carrey: "What about having children together?" To which she replies:

"[Exhaling] Let me take a drink of water on this. I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."

Well I'm sorry, Jenny. You really lost me there.What do you think all the autistic adults think about that statement? Did you consider how you made an entire group of people FEEL? How would you like your mother to say that with you, she got her "a-- kicked?"

As a mom with five children, and four of them step children, they are a blessing. Adam is a gift and everyone of his brothers and sisters will agree. You can read Max's take on Adam in an essay he wrote nearly two years ago now: From Adam's World To Mine. Max is now a one-to-one for older autistic children at camp.

Adam has made our lives richer by showing us that we can, without difference and disability, often be living in our own little worlds, our boxes, our arrogance. Our willingness to open up to possibilities, and to learn from Adam and other like him, enables him to succeed and us to become larger. Adam is beginning to speak sentences, even though he does not speak much, and other days can't speak at all. He can spell, he is aware, and he is --God forbid -- autistic. Jenny's child is the same age as Adam. Adam could not do many of the things his same-aged peers did when he was two. But yes, even autistic kids grow and learn with love and support. Adam has had lots of support, but not always the typical kind we hear about. We struggled to find ways that specifically HE would benefit from -- and we had to weed through various therapies and therapists to make it work. Today, his teachers are commenting that he can do many things that the other kids cannot! While I agree with support, I also know that autistic kids learn which is why, at five, we might be hearing that kids are "cured," when they really are still autistic and learning.

As I said, I have no issues with parents who want to relay difficulties and challenges and be honest with how they feel. I do have difficulty in preaching unfounded methods, insulting a community of people by stating autism is "horrible," without qualifying that "horror" -- is it really within the person who says it? Perhaps this reflects a need for more self-reflection instead of blame.

I am also uncomfortable with separating autism from the person -- because while there are challenges in being any kind of minority, in this case a person with a disability, we should not undermine individuals just because they have a disability. We have to acknowledge that human experience is, in part, defined by who and what we are. I see parents who always want to separate that -- autism is just a label. Of course we are more than our "label." Yet it's more complex than this. The architecture of our lives is effected by both our environments and the way we were born. So why are people really saying this? Because they believe autism is awful? Because they are afraid of the stigma? I am always curious why people think they can separate autism completely from the person. We can't take deafness away from the deaf person and the way deafness influences their experience the world. We can't do it for blindness, physical or any other disability.

Now, let me conclude that I wonder if Jenny would still have children if she saw this video: Neurotypicalism Every Day by Christschool. Of course, it is a response to Autism Every Day, the unfortunate and poorly thought-out Autism Speaks' video. It just goes to show that if you put a certain kind of lens on something, you can yield a certain kind of result. Typical children look "horrible" to me here. They have melt-downs and geez -- parents get divorced over them. If I saw this video, I would NEVER want to have a neurotypical child: