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

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Wednesday, October 10, 2012

What I want

Trigger Warning: Talking about silencing of autistic people, Autism Speaks, in the last 2 paragraphs. (The rest should trigger-free.)

I want an iPad in the hands of every non-speaking or sometimes non-speaking autistic person who can use those. I want one in the hands of every autistic person whose language skills are just plain better when typing than when speaking, too. The exception is that if there is some other device that works just as well or better for said person- then I want that device in the person's hands. (For me, it is a laptop. I like having a physical keyboard.)
I want communication cards in the hands of anyone who wants them. I want communication cards to cover more situations, including the right to say "NO" and "GO AWAY." I want communication cards that let people say so if they are being neglected or abused, and I want these cards in the hands of everyone who can learn to use them. I want their use taught to everyone who can learn, even those who normally have iPads, because sometimes the battery dies and the power is out.
I want sign language to be an acceptable alternative to speech, with interpreters more readily available and knowing it more common. I want it to be OK for someone who is not deaf but finds signing more accessible than speaking to be able to use it without fear that they will have yet more inabilities presumed based off the use of sign language. (I want deaf people not to receive discrimination for their inability to hear, which would also solve the problem of non-deaf people using sign language being discriminated against.)
I want it assumed that every person understands what is said in front of them, even if they do not know how to communicate this yet. I want it known that if you put a printed page in front of someone, that that person just might understand what is on it, even if communicating this has not been figured out. (If they tell you that they can not read, that is another story- listen to this too, and find another way to communicate, but this is more about blogging/writing about people and leaving it where they can see because you don't think they can read.)
 I want every person who has found a way to communicate to get the deciding say in their own life and care, and I want finding a way to communicate, standard or not, to be a top priority for whoever is helping those who have not yet found a way. I want people to be listened to about their own lives. I want people in charge of their own lives. I want people to realize that autistic people and other people with disabilities are not eternal children, and that trying to keep us so is harmful for everyone involved.
I want people to not fear autistic people.

And Autism Speaks could be helping with this. They aren't, but they could be.
I look at the person whose title used to be "social media crisis management." It's not his title any more- now it's something about digital strategy. (The social media crises are almost always angry autistic adults, and management is almost always trying to get them to shut up, occasionally with threatened lawsuits.)
So, that means that they spent $146,390 on the salary of someone whose job it is to shut up angry autistic people. That's right, $146,390 on silencing members of the group they claim to be helping. And remember how I want an iPad in the hands of every autistic person who could use one? The most expensive iPad is only $849.99. The apps needed, even with some trial and error to figure out what works, are highly unlikely to cost over $150. So Autism Speaks could have given a voice to at least 146 autistic people with the money they paid someone to silence other autistic people. Using his deferred compensation and non-taxable benefits, they could have given a voice to at least another 20.
Does that give you an idea of their priorities? It gives me one. If they were really a force that helped autistic people, this wouldn't be as much of an issue. (Have you ever seen an autistic person protesting an event that benefited the Doug Floutie autism charity, for example? I haven't, probably because they spend their money on services.)

No comments:

Post a Comment

I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.