I had a speaking role in a video not long ago which was presented at a conference where Bob Wright of Autism Speaks was also presenting. I was told that Mr.Wright spoke directly following the video and mentioned something about wishing that all people with autism could speak as well as those of us in the film.
I wish I could have told him how many times during my lifetime, I have sat in meetings where decisions were made regarding where I would go, and what I would do when I was unable to advocate for myself. Many of those times, especially when I was younger, were due to my inability.
However, what I would most like to convey to Mr. Wright and others like him is what I have learned from such meetings, from a lifetime of being a disabled autistic and being considered that way, often being declared incompetent, and also from being in institutions where it was made clear what the public saw as my place in society.
What I have learned from my experience is that not only was my ability or lack of it often influenced by how I was being treated but also the treatment was ultimately much more of an influential factor in my silence than my skill for forming understandable sentences.
This has, and still does, influence every aspect of my life. As I have posted to my blog many times, there are very few opportunities for people who have not been given the opportunity to speak on their own behalf to overcome the obstacles so that they will be able to do that.
This is not a mistake that society has made so campaigning against it has rarely if ever produced any positive results. This is clearly representative of an attitude that is meant to give more advantages to those who already have them. When people ignore the root of why oppression exists, they automatically contribute to the problem.
Once it is understood how widespread the problem is people will be less likely to promote commercial and political agendas that only make the problem worse in the long run. There is no merit in most efforts claimed to be politically expedient because the attitudes that create such political agendas and the public policies as they are now are too firmly established for any simple restructuring.
The way to create real change is to get more people involved who are now being excluded due to exclusive standards. This is not that difficult and won't take that much time. It's just a matter of discontinuing what is now being done to prevent the inclusion of this population. Nothing else will affect needed change nearly as much.
The people who have been in similar situations as myself and whom I have been associated with will not join a political movement where the attitude has not changed. It is more important that this population be included than for any small changes in public policy being made. Once this population is included there will be a better understanding of what needs to be changed. However, many of us know all too well what it feels like to be objectified for the objective which someone else has decided will be best for us.
"Nothing About Us Without Us" has too often been used as a slogan used by Disability advocates, which promotes exclusivity. If there was a way to get the best and the brightest included so that misfits would be able to follow, we would have seen the progress made by that approach already.
In places where this destructive attitude is so ingrained in public policy, those who see how they have been victimized by that attitude will not be able to follow until how they think, and what they have to offer is legitimized.
Whatever agendas aren't already supporting eugenics will eventually become that way, unless the attitudes that support a narrow group of people at the expense of everyone else don't radically change. When people don't acknowledge the extent of the problem, they are buying the expediency they claim will solve small problems at the expense of those who are most affected by the larger more general problem. In the long run, no one will be served by this approach.
Note: I'm reposting a request from Stephanie Lynn Keil which I think is important. I hope my readers will support this:
Finally, a productive advocacy group, NOEWAIT. I recommend everyone go visit the site, print out the documents and mail them to your congress people. I am definitely doing this. Today. I'm on the waiting list. Do something productive.
Here of course is the Irony, I was at that at event where the video was presented, and Bob Wright certainly heard me not so much speak as shout. Then more recently the NAS Council heard me fail to speak. (if you can follow the metaphor there, they heard my struggles at coherent speech and my having to find alternative means of communication)
My part in that video has me speaking but the importance is not in my speech but in the music and what my hands do, the speech is but a gloss on it for those who don't see it at first hand.
What is the answer? Well the most despised of academic genres is media studies, no one has much yet heard of the concept of videracy as the new literacy that is to say a true understanding of the audio visual media of television and youtube.
Perhaps media studies is met with derision precisely because the comprehension of it is so challenging to those who wish to brainwash us through it.
Posted by: Laurentius Rex | November 16, 2009 at 07:00 PM
I liked everyones message in the video. I like what that video did in giving people a voice or expression whatever that may be. I like what you are doing with that medium too with your videos etc. I hope that more such projects will be funded. I agree that is the new literacy.
The problem is that those brain washers have created an appetite with how they market things and most of the population who need to be included and heard from not only won't satisfy the appetite but that appetite is further endorsed commercially and politically by people who claim to be speaking for us so we aren't encouraged to do so.
Not only do those who are speaking for us not want to hear what we have to say until or unless we meet the standards for appetites which commercial advertising is designed to satisfy, but by further encouraging that attitude and demanding changes from people who don't have opportunities, they make the real and lasting changes impossible.
We need to broaden our inclusion and encourage people who at this point aren't even interested in advocating for changes that will help them. Other people won't want to see and hear us if those who are speaking on our behalf don't want to.
Posted by: Ed | November 16, 2009 at 08:26 PM
Yeah I think that was one of the most effective awareness videos I have seen, because we just do what we want, not the usual (how bad it is to have autism) presentation that is seen so often.
It shines way above the NAS stuff, but I can't say too much about my personal criticisms of that because it is involved in my research and I don't want to prime anyone with *my* opinions on it.
There is always a danger about how we go about being more inclusive, some will see that as an attempt to politicise people who are not political, on the other hand I am concerned about what charities like the NAS do when they recruit spokespeople who are somewhat 'safer' than you or I, I feel somewhat excluded on those grounds.
Anyway what I am trying to do for the most part when I present myself, is to be myself not a parody of what an autistic person ought to be, and being myself comes with the political package included. My autism (or eccentricity) is not the subject itself, it is the background music as it were to what I want to get across.
Posted by: Laurentius Rex | November 17, 2009 at 04:56 AM