Autism Speaks; Ersatz Representation
"During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share."
This comment was made by Mothersvox as a way of explaining the negative tone and emphasis of Autism Speaks’ Autism Everyday video.
Mothersvox has it about half right. Yes, the goal is to build solidarity. But how can this be a rational means of building understanding based as it is on an extreme of negative emphasis? Is this the kind of ‘awareness’ we want the general community to have? Who knows, our kids might want a job and a life some time in the future.
Things like Autism Everyday come to be because the main goal of 'autism' societies of every stripe, unless they happen to be run by autistics, has very little to do with swapping notes to help the kids and much more to do with sympathy and emotional support for the plight of the parents. When Sally is asking ‘What do I do about Joe jnr’s tantrums, meltdowns, violent outbursts’ (insert horrible behaviour here), she is not really seeking advice, she already knows what the options are and all she wants is the collective support of her fellow sufferers, well maybe some advice as well, but that’s not the main aim of the game.
There’s nothing wrong with that in principle. It's a social thing. It's what all social people do in situations where they can have a sense of solidarity or group identity about something. But in practice the emotional bonding and solidarity become the social imperative, overriding all other considerations, including the ostensible reason for the group’s existence. But you won’t find that anywhere in the blurb advertising the aims of the site. To a site, they will claim to represent autism. It will be taken as axiomatic that they are the advocates for their children.
And that is true up to the point where the social imperative takes precedence. That point can be seen in this video, on the ASA’s ‘Getting the Word Out’ campaign and in virtually all pronouncements emanating from Autism Canada.After that point, it must be blindingly obvious that the interests of autistics, including their children are no longer paramount.
Would you like these folks to be speaking for you?
This comment was made by Mothersvox as a way of explaining the negative tone and emphasis of Autism Speaks’ Autism Everyday video.
Mothersvox has it about half right. Yes, the goal is to build solidarity. But how can this be a rational means of building understanding based as it is on an extreme of negative emphasis? Is this the kind of ‘awareness’ we want the general community to have? Who knows, our kids might want a job and a life some time in the future.
Things like Autism Everyday come to be because the main goal of 'autism' societies of every stripe, unless they happen to be run by autistics, has very little to do with swapping notes to help the kids and much more to do with sympathy and emotional support for the plight of the parents. When Sally is asking ‘What do I do about Joe jnr’s tantrums, meltdowns, violent outbursts’ (insert horrible behaviour here), she is not really seeking advice, she already knows what the options are and all she wants is the collective support of her fellow sufferers, well maybe some advice as well, but that’s not the main aim of the game.
There’s nothing wrong with that in principle. It's a social thing. It's what all social people do in situations where they can have a sense of solidarity or group identity about something. But in practice the emotional bonding and solidarity become the social imperative, overriding all other considerations, including the ostensible reason for the group’s existence. But you won’t find that anywhere in the blurb advertising the aims of the site. To a site, they will claim to represent autism. It will be taken as axiomatic that they are the advocates for their children.
And that is true up to the point where the social imperative takes precedence. That point can be seen in this video, on the ASA’s ‘Getting the Word Out’ campaign and in virtually all pronouncements emanating from Autism Canada.After that point, it must be blindingly obvious that the interests of autistics, including their children are no longer paramount.
Would you like these folks to be speaking for you?
posted by Alyric | 8:47 PM
2 Comments:
"Would you like these folks to be speaking for you?"
No.
As Ian P said (when asked: "Would you like these folks to be speaking for you?")...
No.
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