Monday, December 1, 2014

The Gated Autism Community Part 2; The Solution

I recently wrote in a Facebook status update about the exclusivity of the so-called online autism community. I was asked to expand on this idea and give it a title. I did and it was posted where people not on my friends list would have access. The response indicated it wasn't appreciated.

First, points were subtracted from my overall grade for how the way I wrote was incomprehensible. One woman asked someone else to explain because it bogged her down. When I offered to answer a question, she neglected to ask one. She told me that it read like a medical textbook, and she was just a grandma who needed things in layman terms. Upon hearing I hadn't graduated elementary school, and my jobs only included manual labor, she said she hadn't meant to hurt my feeling and gave cyber hugs.  

Next I received a poor grade for the way the essay was lacking in a conclusion or a solution. (This, of course, is something I may have learned had I attended essay writing class.) Without such a thing, the theme was dismissed as nothing more than complaining about an uncurable societal ill rather than joining the ranks of those who were supposedly willing to address that which could be addressed.  

Those commenting consistently referred to me as if I wasn't involved in the conversation long after I'd clearly shown that I was. One, in particular, told of what Mr. Ised (meaning me) doesn't understand and is wrong about and included passive-aggressive questions implying what I may have meant. She identified herself as one of the people with Asperger's who had pushed for the needed change and suggested that rather than include more whose contributions go unrecognized, we should all be more respectful and appreciative of her hard work and that of others like her.

People said they weren't following the point yet they wrongly assumed what it was and critiqued it. Ideas were taken completely out of context so the writer could be discredited, and the content could be ignored. Despite my request for specific questions, some continued to ask for the central point of what I wrote as though I had intentionally neglected to explain as best I could. I was even told that what I write was full of smoke, and that I should have instead used my own words.

More than one person, commenting asserted that although I had failed to communicate effectively, I shouldn't claim to advocate for those who were poorer communicators. I once followed with this but received no response;  
"Further separating a marginalized group for the sake of convenience into contribution-ignored and struggle-ignored subs will only help to ensure no one but others will ever decide policy that affects them or influences the way society describes them. If someone ever does contribute recognizably, they're simply placed into the other category so the status remains the same."

It's convenient to describe the autism spectrum as ranging from people with assets to those with deficits. This fits with age-appropriate standards, the way developmental disability is defined, and the traditional emergency-room means for acquiring services. It also encourages the way people are seeking association and endorsements of so-called important people while further suggesting that the excluded are unimportant. Nothing could be more backwards.

Inclusion is nothing like the politicians describe. They can't alter the system but need to claim progress in order to be appointed or reelected. If a community was truly interested in inclusion, they would first recognize more of the contribution currently being ignored and create something that the so-called support system either can't or won't.  

Politicians and scholars will present a problem either as either the catalyst for debate or in such a manor that they aren't expected to address it. I, on the other hand, have no reason to do either. As I mentioned earlier, a mountain top or birds's eye view is not an advantage unless the people who are being decided for are the focus. If their contribution is believed to be insignificant, the claim that they are being served is disingenuous at best.

People communicate when they have a reason. They will best be able to explain what access entails when they are viewed as the primary source of solutions. The point of describing the autism community as gated is to highlight how people are being excluded who shouldn't be. The solution to exclusion is simply inclusion. Whenever a method of exclusion has been better understood, anyone wanting to avoid it will be more equipped to do so.

Friday, November 28, 2014

The Gated Autism Community

No matter what autism statistic is most accurate, there are few participating in online discussions, which affect policy as well as society's perceptions. Therefore, this shouldn't be called an autism community. 
It would be fine to claim that the goal was to be inclusive. However, those who are most excluded aren't the bullies but rather their victims. This fits well with the suggestion that we need more celebrities representing us and raising our status above that of the disabled. With such exclusionary goals, there's nothing representative about this so-called community.
In an environment with true representation, many of the therapies would be described in a completely different way and may be abolished. Furthermore, if those who were diagnosed began to believe they were regarded as worthy of influencing the policy decisions that affected them, more abuse would be reported, and society would have less means of segregation.
Integration is mainly just presented as an unrealistic ideal by politicians who want to be reelected. It works similarly to the goal of curing incurable societal ills. The decision makers are afraid the diagnosed may truly integrate if they get too much of the support they need so they need excuses the valued public will accept. One way disabled people's exclusion is traditionally justified is by the claim they are morally inferior. The idea of inability and differences in access requirements, communication, perception, and expression are far too inconvenient. Instead, it works much better when it's suggested that people are lazy, immature, stubborn, and unwilling.
People who aren't influencing policy aren't neglecting to take on the task. Their inconvenient ranking prohibits them from doing so. No one believes the cart-before-the-horse approach to inclusion will do anything but protect the status quo. Nevertheless, people who need supports are expected to prove their worthiness before they can explain what support they need. People qualified to provide answers aren't be allowed to participate.
The traditional political arena honors standard hierarchical ranking and equates those with the lower ranks with deserving blame, punishment, and being ignored. It's suggested that those with a bird's eye or mountain-top view have earned their position, and others just aren't willing. Such people's lack of education and experience or their ignorance (these really are viewed as inseparable) classifies them as worthless.
In order to protect tradition those whose contribution is valued are believed to have already over-come the obstacles which others are facing. Having only a few contributions valued, and everyone expected to follow one of the few approved paths prevents any challenge to the traditional system and those who benefit from it. Not only is diversity perceived as a threat to the system and those involved in it, it's those whose perspective is different and those who will offer new and alternative approaches that are needed most in creating policy that will aid in their success as well as more success of others.
The online discussions concerning autism aren't public at all. The only people participating are society's valued members. The only way it can be considered a community is if the word gated is added as a prefix. As an extension of the system which promotes traditional values, re-electing politicians is all that will be accomplished.

Tuesday, November 11, 2014

The Seinfeld Syndrome

In a recent interview comedian, Jerry Seinfeld suggested he may be on the autism spectrum. This inspired bloggers to weigh in on how his "coming out" (yes, that term doesn't really fit) would affect the future of autistics. This article , ,Jerry Seinfeld’s not helping: Celebrity autism claims distract from reality and research said this

"Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand."

The writer seems to be suggesting that not enough fear and panic have been stirred for what she, with no evidence, calls a disease. Besides how the division of high and low functioning was created is as fictional as the claims of I.Q. tests, standardized test, and the exclusionary line between able and disabled, most of the diagnosed are at the end considered high. There would be no way to cause a panic without those statistics. Therefore, she's helping to create a house of horrors filled with smoke and mirrors.
Then she says, 

"It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola."

She like many others won't accept how society's fear and disgust of disabled people are encouraging those who are supposedly shouldering the burden to dispose of them as one would any other defective raw material.

Then there's this from John Elder Robison on : Jerry Seinfeld and Autism

He says this:  "That brings me to my last point – overcoming or emerging from disability.  Mr. Seinfeld is 60 years old.  He’s found a place for himself in the world.  Did he do it by “figuring out the formula to make people laugh, even though he does not get is himself?”  Maybe.  I don’t know."

This comedian is of course quite talented but his ability to make people laugh is not so complicated. He's made it quite clear that comedy should have no boundaries. He vigorously defends what he calls his right to exploit people, including those with disabilities.

We wouldn't even be discussing him if it were not for his career. It's terribly ableist to suggest we consider what he can do for us in view of what he, throughout his career has done to us (us meaning all people with disabilities). 

Robison says "I do know that the “overcoming disability” model is an unhealthy goal or way to portray autistic people.  Emerging from disability is a healthier perspective.  Autism is not a demon to be battled and overcome.  It is a difference that can cripple or render extraordinary.  Most autistics are disabled as children because our sensory apparatus is different, our communication skills are weak, and we have not yet learned coping strategies, or found our gifts."

"We" very rarely find our gifts. Most of us are discarded because of the narrow standards which marginalize and disenfranchise us. The expectation of emergence is every bit as crippling as that of expecting us to over-come. The language sound like that which is used at conferences and symposiums which are nothing more than career-advancing networking opportunities for academics.

The trouble is mainly due to the distraction of pragmatism and the myth of how people with a mountain-top or bird's eye view are best able to understand the problem. The people who are facing these obstacles are considered too uneducated and/or ignorant to contribute to the conversation. Instead, the causes need celebrity appeal and the wisdom that can only come from scholars. The few who have overcome something can teach that which get's labeled the common struggle and raise the status of otherwise ordinary others who are inadequate, ignorant, neurotic, under-preforming, and deficient.

This way the system, the standards, and those who have benefited from them aren't challenged and that which is referred to as competition can continue being called fair. The people making decisions for everyone don't understand why so many are what they call "falling through the cracks." However, such people won't be asked because it's believed that they don't understand history and infrastructure and are simply complaining due to their narrow view, which is burdened by inexperience and a poor attitude. It's believed to be better to write such problems off as nothing more than incurable social ills and keep the political wheels turning with promises of progress.

He says, "When we find comfortable environments, learn to communicate, and find what we can do well we begin to emerge from disability.  When we find places that our autistic differences are respected and we discover they give us advantages, we emerge more. Perhaps Mr. Seinfeld will talk of his own emergence and so provide a constructive model to younger people who follow.  I don’t know what he will do but I say, let’s give him a chance."
I hope no one learns from this that someone who does that is entitled to the respect which they deny others.

What Mr. Seinfeld said in the interview is "I don't see it as a dysfunction. It's just an alternative mindset."

This could be a way of recognizing how all disability is simply a social construct. Based on this man's career and all that he teaches (yes, comedians are teachers) I don't hear that in what he's saying at all. Instead, he'd like for his particular disability and the way it's personally affected him to not be something as ugly as a disability. This way, he can continue cashing in on the jokes about all those he considers "the others."

The Sienfeld Sydrome employs something similar to Bill Cosby's approach to civil rights. Having a disability doesn't mean that someone never contributes something that is valued. It does mean that a person has been categorized as someone whose contribution isn't valued. Some are considered both contributors as well as disabled. However, identifying with people who are labeled over-comers in order that your diagnosis appears less ugly than others, is every bit as bigoted as what gets classified as inspiration porn.

If the majority of people who need supports are to be helped, the public must understand that it won't occur from those who have already succeeded helping them to follow the traditional path. That path needs to be abolished, and realistic inclusive standards created.