Friday, March 14, 2008

IACC Statement that was to be given today

I am not here to give some trite simple minded verbiage about autism being a blessing. Nor am I given to preach the hopelessness and devaluation of autistic lives that curbie groups promote. Soren Kierkegaard, The danish existentialist wrote "God blesses those he damns in the same breath". Much of my thoughts here today are informed by the story of Abraham as presented by Kierkegaard in "Fear and Trembling".

Not all awareness is good awareness. It is simply not enough to support awareness. I am very much against the dis-abling attitude promulgated by Autism speaks and others. On one level, It feeds into the despair and initial hopelessness. Parents who don't know what autism is when faced by this unknown are disoriented breeding fear and anger. They are ripe targets for any snake oil salesman that comes by. On another level, It contributes to the disrespect and devaluation of autistic lives. It does not promote understanding of stimming and comorbidities. It even promotes lies how autistics do feel about themselves.

Autism cannot speak. just like Abraham could not speak. How intelligible, is it for a father to kill his son that he adores? If Autism did speak it would be unintelligible as well. For it is fantastic to have friends, to be loved and respected and admired. But the paradox of autism and it is really is a paradox or it would be done for as much as Abraham would be done for if faith was not a paradox.If it was not a paradox, It would be on the order of a disease, Such that only an evil person would oppose a cure. But Autism is so much more than simply that.

The Greek tradition that threads itself throughout our society, is the poison that we are in need of a cure from. A priori goodness, beauty. Also what it means to be human. All absolute standards any deviation from which is sickness, disease and death. Kierkegaard wrote about what it means to be not in alignment with the universal in the discussion of the book of Tobit. He relates this to being born different. To be someone out of alignment with the universal from the start. This is about all of us who are born not in alignment with the universal whether they are autistic , down syndrome,cleft lip or just clearly not the same as most people.

We must value autistics on their own terms. Many autistics have made huge contributions to our society. Browbeating an autistic to give up his arcane and narrow interests in the quest of being social as his focus is no victory. An autistic will always be autistic. To have him to give up his gift of being unintelligible is a terrible price to pay. We all know that this social acceptance and social conformity is an artificial construct foisted upon him. As it is, a violation of his nature it will never be truly his. Condemned to be ordinary. Kierkegaard relates how it is a mockery to say to Sarah - "Why don't you express the universal and get married." It is a mockery too to say to those on the autistic spectrum for example, "Why don't you express the universal and get married, enjoy sports, sit still, stop it with arcane facts on medieval pottery that Nobody wants to hear".

Bram Cohen when he invented bit torrent, he was alone not managing a team. Was he intelligible? Did others see the value of his work before it was finished? When Vernon Smith received the Nobel prize, He stood alone. When did his colleagues see the value of his work? If they really saw the value and the forthcoming Nobel prize it is hard to imagine that they would not jump in with both feet right away. No, They were unintelligible. Aligned with universal in the end on the basis of faith on the strength of the absurd or paradox.

So here is the reason why the puzzle piece is so pernicious. It truly represents the fact autistics being out of alignment with universal are an enigma. It is condemnation from a society that praises social recognition and clarity. It has no room individual unintelligibility to the whole. Without which you cannot have individuals rise above and achieve what the society thinks and deems impossible.It mocks the very foundation of autistic existence. It is worn by those that imagine their lives have a value and meaning autistic lives don't because those lives and their meanings are unintelligible in the immediacy. It must be remembered that to truly mock Jews, they made them wear the star of David as it is a symbol of their Jewishness.

When it comes to formulating public policy on autism it should be about letting autistics be comfortable in their own skin, unintelligible to society but en-passioned with their goals. Allowing them to be them. Anything less is disrespectful and unacceptable. Autism is only a tragedy in society that cannot understand the true worth of an individual. Autism is a challenge, something to get through not overcome.

2 comments:

abfh said...

Excellent statement Joe -- I hope they're listening.

Camille said...

Were you able to give this statement?

I think it's profound, and far more food for thought than many there are used to "chewing on" I imagine.