Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, March 7, 2013

Whose Opinion Matters?

Trigger Warning: ableism, silencing, inspiration porn

A big piece of privilege, I think, is that you get to define things.
You get to define whose opinions are and aren't relevant in discussions, even discussions where, by rights, your opinion should be irrelevant. But it's not, because you get to define it not to be.
And you can define the people who are actually affected as having too personal an interest, as not being objective.
And they are silenced.
We are silenced.
It happens all the time.
Or you write the definitions of actual things. Who writes the dictionary? It's not free of bias. It's written by abled rich white men. They define words so as to make themselves correct.
And so as to make prejudice against the privileged groups, you know, the kind of prejudice where you really can't do anything with it? It's on the same level as the institutionalized oppressions,  uses the same words as the discrimination where people literally get away with murder.
And when we try to speak, it is prejudice against them.
We are silenced.
Or inspiration porn, since that's a recent issue, what with the basketball video going around.
Privileged people define it as inspirational. They define this sort of thing to be sportsmanship. They define it to be good, because it makes them feel good. They define making a big deal, a viral video, of what shouldn't be a big deal but somehow becomes one when the manager is developmentally disabled, as wonderful and worthy of patting themselves on the back for.
They define our offense to mean that we think he shouldn't play basketball, that he shouldn't have been on the team. (Well, that they shouldn't have put the manager in. Which, if it's not a tradition at that specific school, they should have at least run it by him first, but if he'd been asking to play it's reasonable play him.)
That's not our offense.
We've played team sports. Neurodivergent K played basketball, even. (I only ever played softball and Ultimate that could really be called team sports, though I was on teams for other things.)
The way the video was done is offensive.
The fact that people patronize the player is offensive.
The fact that the video "about" him and his moment isn't really even about him, but has him as an object that other subjects act on, is offensive.
More than offensive. Perpetuating actual oppression.
Or another recent issue, Autism Speaks and their erasure of Autistic people from our own activism.
Our refusal to be erased gets redefined as being about wanting credit. One parent said that if we were doing it because we wanted credit, we were doing it for the wrong reason. Care about reasons or don't, take your pick. If you care only for results, not reasons, then that argument can't even be made, and if you care about reasons, care about the reasons we were erased. Care about the reasons erasure is bad. Care about the rhetorical foundations that make erasure seem natural, and be prepared to tear them apart brick by brick.
Privilege means getting to have it both ways, though. Misrepresented reasons for activism matter, but actual reasons for erasure and the erasure itself apparently don't. (Our activism is done for the results. One of the needed results is, in fact, that we be seen as the active participants in our own stories that we are, which means erasure needs to be protested as a part of our activism. Not as a reason for the other bit of activism, but as a piece all its own.)
We don't even get to define our own reasons for activism. We don't even get to define what helps us and what hurts us. Privilege means holding the power to define terms and to define the reasons for actions, even the actions of others.
It means being able to tell Autistic people that their demands not to be erased is overlooking the cause (of autism.)
We are the cause.
But "It's not about you." (us)
Our opinions don't matter, even when it very much needs to be about us, even when it very clearly is about us, even when we are the cause, our opinions and stating them is somehow detrimental to the cause.
Whose opinions will we care about? 

1 comment:

  1. Suggesting that autistic people (and Autistics and people with autism) speaking up about what they want to happen with regard to societal perceptions of autism and their own activism are somehow doing anything at all besides contributing to "the cause" (unless "the cause" is actually meant to refer to donations, but I doubt that; those people sound like they care and are doing a bad job of it, rather than like they don't care at all)... is simply nonsensical. How can the cause be at odds with itself? It's conceivable that you are hurting someone by furthering your own interests, but, if so, it isn't yourselves.


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